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Nervous – my first BIG day in years!

Today my parents are up for a visit to belatedly celebrate my dad’s birthday, and we have a big day out planned.

We’re going to a zoo. Not just our teeny-but-lovely local zoo that’s a 15 minute drive away, but a BIG zoo a 50 minute drive away. That’s a huge journey for me (travel being my biggest trigger) and the zoo will most likely be packed with visitors, as it’s free admission until the end of this month.

After that, we’re hoping I’ll be well enough to look around a few shops and handle a meal out at a pub.

This is the sort of day out I haven’t been able to do in years, and so obviously I am nervous. I’m also aware that MANY people will stare at the zoo, due to my goggles. But I need them, so fuck ’em 😉

With my wide-brimmed hat and my polarized goggles, I’m hoping we can enjoy a really good day out with not too many seizures. Nervous but excited!

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A scary day turned good

I woke up this morning and realised immediately something was not right.

I figured I was about to have a seizure (I have a lot of seizures just before and after waking), but when I got out of bed I didn’t have the balance to walk. I had to crawl to and up the stairs to go the loo, because I was literally tipping sideways when I tried to walk.

I had a few seizures but was still just totally spaced, out of it, and scared. I was having lots of seizure warnings (auras) and some seizures, but I wasn’t feeling better at all between them. I didn’t know if I should be heading to hospital or what.

I wondered if maybe I was about to have a really bad migraine, as in the past I’ve had similar auras to seizures for that, and the left side of my face felt numb. That also happened during a migraine aura in my teens. I took some extra strong pain pills just in case.

After an hour and a half of this scary ‘offness’, I finally began coming out of it. My brain began to clear, and although I was still spacey, it was different.

My final seizure was a very odd seizure where I wasn’t responding and was twitching, talking repeatedly about tadpoles – tadpoles?!?

My partner said I was lying staring blankly, alternating between saying “TADPOLES – TADPOLES – TADPOLES” and saying another phrase involving tadpoles.

I also had one of the seizures where I rubbed my eyes ferociously during – idk what that’s about. Afterwards I had huge red rings around my eyes!!

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And hey, who knew it – some disabilities are INVISIBLE!! This is *such* an important message to me, because so many chronically ill people with hidden disabilities constantly hear “but you don’t look sick!”

This could be from friends, family, or people who are being rude (intentionally or not) when you’re out in the world. Maybe you asked for a key to the disabled toilet at a library, maybe you have an assistance dog, whatever – to all the non-spoonies out there, you should never EVER EVER say to someone “you don’t look sick”. Looking sick has shit to do with it, if you’re sick, you’re sick.

For the last 90 minutes before the photo above, I was having seizures and scared I would end up in hospital. Looking at this photo, you wouldn’t know that.

‘Looking sick’ has no meaning on how much a disability affects your life.

(</rant>)

Once I’d recovered from the morning, we *had* to get out to a bank.

My partner’s bank card is broken (we have money in the account and can see our account on a machine, but for some reason the stupid bank aren’t letting us withdraw ANY money?!), and because my partner hasn’t had a phone for over a month due to his dad not sorting it, we had no way to ring the bank…my phone had no credit, and we couldn’t get money to top up with!!

So today we had to get to a bank before it shut at 4pm, to get money out of a savings account so we could live until his account is sorted.

The bus journey’s weren’t the hell I was imagining, thankfully, and neither was the trip out. I actually only had one or two seizures, and we were able to go in a few shops, eat a meal, etc 🙂

He was hiding the bubbles in his drink, because I have a tendency to accidentally fixate on them and trigger seizures!

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Afterwards we found this crazy ice cream booth in the market – flavours included salted liquorice, cheeky monkey, blue banana, and turkish delight! My partner got a turkish delight flavoured ice cream and now says it’s his favourite flavour!!

When we got back I was even able to clean parts of the house and join my partner walking two of our dogs.

So all in all today has been good…it just had a really awful start 😛

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Why must I be out in the world?!

We signed up to the new GP surgery today, the other one in our town.

We get there, and the receptionist says that although we’ll be signed to this surgery, most appts will be at the other surgery, a 25 minute bus ride away…whyyyyy?!

Apparently you can see Dr’s at our surgery, it’s just a longer wait as there are fewer appt slots there. We said that was fine as the previous surgery left you waiting 3 weeks for an emergency appt XD

Even so, apparently we have to have a ‘meet and greet’ appt with the GP before we will be registered, and that has to be at the far away surgery…this sucks because I’m already going to freaking out (I haven’t had a physical appt at a surgery in a few years, and this will be a new surgery with a new Dr!) and the bus will make me very sensitive seizures too. Add some stress and I’ll be fucked >__<

The receptionist said the lighting was dim at that surgery too, when I asked, but my bf still wants to try and get the meet and greet at the nearby one. Idk.

Filling the questionnaire in was fun, considering all the information they demanded from you, and I had no idea what to put for epilepsy…I’m 98% certain I have epilepsy (as my seizures are light triggers, no t tonic clonic, and I have auras – all are incredibly rare with NES), but as I’m not diagnosed I couldn’t circle it.

In the end I circled everything, and put seizures under investigation, which is what a previous Dr wrote on my fit note.

Whilst we were out I also goggled up and got to go in the second hand bookstore, where I haven’t been able to go for years due to seizures and lighting. I love this place, and found a very old interesting dog breed book 😀

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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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My mood takes a dive

My psychosis is creeping up and my mood’s taking a dive. I imagine the two are connected.

I didn’t realise I was even experiencing psychosis until a few days ago, when my partner commented he couldn’t see something I could…then a few other things clicked into place too!

It feels like depressive episodes creep up on me so quickly these days, it’s scary. It’s like quicksand; I go from feeling safe, on a solid surface, to floundering helplessly and in grave danger very quickly.

I only noticed my mood plunging a few days ago and already I feel really, really bad.

My partner’s noticed, obviously, but I’m able to hide the true extent…it’s not that I want to lie to him, it’s just that I feel bad telling him how awful I truly feel, and dragging him into the darkness too.

Mental illness sucks so much dick…

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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.