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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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Bad bits and good bits

Today got off to a shit start, with my GP surgery being major dicks yet again!

My bf phoned up to ask if the surgery could legally do a blood test if I was having a seizure.  As far as we knew I was on the waiting list for a home test, but we’d been waiting for months and thought with my new polarized goggles I could get in and out fairly easily…we just wouldn’t want to get there, me to have a seizure, and them to say “we can’t legally do it now, come back another day!”…and it’d NEVER be done!!

The receptionist was actually disgusting. She treated my bf like shit. She told him he was wasting their time asking this question, that “there’d be Dr’s there” if I did have a seizure, and – the best bit! – snapped “You’re not having a home visit, if that’s what you’re after!”

Firstly, that IS NOT what we were after, secondly according to the previous receptionist we spoke to we were already on that list!!!

Thanks for letting us know we weren’t at all XD

After receiving no answer, we hung up. We then phoned Epilepsy Action’s advice line, who were almost as unhelpful and out of date in their information…according to them seizures cannot be triggered by fluorescent lighting?!?

Quick google search showed me many others were also triggered by fluorescent / LED lighting, and this post on an epilepsy forum hit home as I share a lot of these triggers!

Anyway.

The benefit of this was that we discovered a new GP surgery in our town. It’s in a small house, so has normal lighting, and means I don’t have to deal with the shitty staff anymore…yay!

Today I went out for 3 hours, which was really fun! It resulted in a high number of seizures (21 simple partial, and 3 complex partial), but without my polarized goggles it would have been much more, and I wouldn’t have been able to do anywhere near as much 🙂

Here’s me in a brightly lit shop!!

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And we even had a meal at a pub 😀

And an ice cream with a view for desert!!

Awesome day 🙂

A few hours after we got back home, my brain crashed and I had to take a codeine for a migraine…but it was worth it!