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Happy Christmas everybody

We’ve had a truly awful lead up to Christmas. Thankfully myself and partner celebrated about 10 days ago and exchanged presents, because I was having a good day for seizures…I’m HUGELY grateful we celebrated then as we actually had a nice day!!

My seizures have been absolutely disastrous this past week, I’ve had two awful migraines…one was my worst yet, with me writhing in bed for hours in absolute agony. Today is another day with seizure clusters and me just feeling totally out of it. And to add to the awfulness, one of our dogs had to be PTS less than a week ago…sheesh. 

I hope your Christmas build-up has gone better than ours, have a lovely day 🎄

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The day the sea froze!

We went searching for sea pottery a few days ago.

This is one of our very enjoyable but unusual hobbies 😂 Hey, it’s free, gets us out of the house, is interesting, and easy to pause for when seizures hit!

It was -3c when we went, and the beach was covered in frozen salt water! The quicksand was also frozen, which meant we could travel much further out, and as a result we found some truly beautiful pieces…this was easily our most successful trip!

If you don’t want to see boring photos of old pottery, stop here 😉

These two pieces, although very dull to look at, we’re cool because we could face date them! They were dated around 1880-1936, as we were able to identify the back stamps.

And here are some of my favourites!

The huge brown circle is a ‘kick up’, the base of a very old bottle. This one is actually green (you can see when light shines at it) and must have been part of a giant bottle!

The entire collection from that day’s outing

And look at all this ice!! I’ve never seen this in all the years I’ve lived here!

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Neurology soon!

Less than 2 weeks to my appt!

Today we went into town (out the house 4hrs, two 10 minute train journeys) and I’m approaching 30 seizures total for today. BUT we had a mainly nice time out 😊

Wearing my welders goggles I was able to go in a bank with ZERO seizures for the first time since I started having them, and none of the Christmas displays (which I love) were problematic because of their flashing lights. Last time I had to close my eyes when walking by them!

Apart from an absolutely disgusting teenager who made the comment “haha they have seizures, let’s get a strobe out!!” 🙄 it was a good trip!

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I smashed it yesterday :D

So I’m getting to a wonderful point with my seizures, and I just need to celebrate.

Yesterday I had a looong day out (5 hours) and I had a lot of seizures.

I had seizures out on cliffs / the beach, in front of dozens of dog walkers. I had seizures in a pub and in front of a friend’s mum I had never met before. I wore my ski goggles around SO MANY PEOPLE.

And I was not ashamed!!

I wasn’t uncomfortable, or embarrassed. I have seizures, I might act weird, I might get sad, I might be on the ground, yes I have to wear goggles…IT’S A FUCKING HEALTH CONDITION, and if you can’t deal with it that’s on you, not me!!

This was a seizure (with a beautiful view!) yesterday

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(I was in zero danger of rolling off, and yes my partner was keeping a close eye on me. He’s been caring for me for years, and I have over a dozen seizures a day, so he’s pretty damn good at it 😛 )

And after I’d taken the time to recover, I was good to go again!

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I also took a risk yesterday and climbed up a cliff. Normally I avoid activities like this…because if I had a seizure, I could die XD

But we discussed it, and I’d be up and over within a minute AND my partner would be right there…I’m not living in bubble wrap, so I did it and it was fun 😀

I am DAMN PROUD of all of this.

For 18 months seizures took everything I had from me.

They ruined every hobby I had (didn’t have the mental capacity or memory to read, couldn’t enjoy photography as the PC screen and camera flash was a big trigger, couldn’t enjoy video games for the same reason, couldn’t hike due to lighting and seizures etc etc). For 18 months I didn’t leave our tiny village, I didn’t travel on transport, I didn’t go into shops. I didn’t LIVE!!

And with absolutely zero help from medical professionals (because they are awful, didn’t believe I was having seizures, and now it’s a 12 month wait to see a neurologist before they even think of meds) every day me and my partner are finding ways to manage and deal with both my seizures and my bipolar.

And we’re rocking it 🙂

Is life difficult? Of course. Am I still hugely limited? Well, yeah. Do I often feel out of it, ill, in pain and make an arse of myself? Of course! But I’m doing all I can to enjoy and make the most out of life, and I’m currently in a depressive episode!!

I’m really damn proud of both of us 🙂

And I am so, *so*, SO much happier with my new goggles!!

I was always uncomfortable and embarrassed in my old ones, because they were so huge and clunky and odd looking…I’m actually proud of my new goggles, I think they look badass 😀

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And on the side there are glow in the dark patches to let people know they’re for seizures 😀

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And some final photos of our new hobby, which we are REALLY enjoying!!

Seaglass hunting!

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I might dedicate an entire post to seaglass hunting, seeing as this blog is becoming more of a personal blog than a ‘lets just talk about how shit things are’ blog XD

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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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Depression, replaced with what?

That awful, all-encompassing depression has gone.

I don’t know what it’s left me with. I can’t tell if I’m manic until I’m really manic, flying high, and my partner’s kinda the same. If I’m hypomanic right now, it’s weak, I can’t tell 😛

I’m hella irritable, I have a decent amount of energy and motivation, and when I’m not flying off the walls in a rage things are going okay. Psychosis still a major issue, but it always is and I don’t count that as an indicator of mood.

I’ve got more things done with my pets today than I did in five days of depression. It’s crazy quite how much your energy levels and capabilities change with your moods. That’s something I wish more people understood.

I wish I could swallow or erase the irritability. It’s SO HARD (read:impossible) to contain it, and it ruins everything around me. I feel so damn sorry for my partner >__<

I get scared whenever I feel like this, I feel like I’m totally ruining our relationship and he’ll stop loving me.

You could argue this is ridiculous, he understands it’s an illness, he’s stuck by me through harder times yadda yadda yadda…that’s true, but it doesn’t mean my symptoms don’t wear him down over time. A bit of irritability might not seem a big deal, but it shows itself as hatred and lashing out verbally, and that’s awful.

On top of that he never gets any respite. I never have okay days, so he never gets any relief. I hate myself for what I put him through.

It’s tough, but we adore each other…that has to count for something.

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A perfect reminder

Today I got time out the house as my family were nearby, so I went out for a few hours with them.

As our puppy is poorly, my partner stayed home with her.

The entire day everything I did was either connected to my partner (“aw, Gog would have loved this…”) or I was talking about him, constantly. Our lives are so entwined and we’re so in love that I feel hollow spending time without him, and I actually can’t wait to get back to him.

It was a fun day seeing my family; the day was tinged with sadness and I felt like I could cry at the drop of a hat, but that’s usual for a depressive episode…but I just couldn’t wait to get back to Gog.

I bought him some stuff to make up for his lack of a day trip, and it’s so nice to be back with him!

A lot of people say they can’t imagine spending every hour of every day with their partner, but it’s never been difficult for us at all…I know we do have the odd hour apart, for example when Gog walks one of the dogs or pops to the shops, but we can easily spend all day together.

Today reminded me that I love Gog SO DAMN MUCH.

He means the absolute world to me, and without him nothing matters. All I need in life is him. Today was a perfect reminder of how wonderful he is, and how much I adore him.