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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!!” πŸ™„ it was a good trip!

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OMG, I have an appt!!!

4 days ago we had the telephone appt with my GP.

It lasted less than 4 minutes & basically consisted of her being confused and asking my partner if “things had got worse” (she couldn’t understand why I’d been sent to A&E or why she’d been told I needed an expedited neurology appt. When she saw me in person a few months back she said I couldn’t be having seizures as I wasn’t ‘dropping to the floor’, and during a video of me having a seizure that we showed her she said “Well what am I supposed to be looking at here? It just looks like you’re watching television” πŸ˜‘)

Anyway, because we’d provided evidence from the hospital that they wanted her to try speed up my appt, she said she’d phone the hospital and try.

Lo and behold, today I got a letter through the door and early next month I have an appt with a neurologist πŸ˜ƒ

I actually can’t believe it!! I’m so nervous about it though haha.

Does anybody have any advice for phoning the hospital to ask if they can provide a room with dimmer lighting for me…? If I have to sit in a room with fluorescent lighting I’ll end up having back to back seizures, and be unable to talk, think, feel sick, confused etc…any advice appreciated!

My happy face πŸ˜‰

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Too much, too much!!

We’ve had a few busy days recently, beginning with my parents visiting at the weekend and journeying to a zoo.

The busyness caught up with me, and for the last few days I’ve just felt so physically exhausted. One day I didn’t leave bed other than to go to the loo. I have been SO TIRED.

For years I would’ve fought against this, called myself lazy, and been filled with self-hatred. But I’ve learned that when you’re chronically ill / disabled, you HAVE to listen to your body. Self care is not selfish! If you need a day of rest, you need a day of rest. If you need an entire day in bed recovering, do it!!

Today I woke up feeling energised, but I pushed myself too much. I ended up having to come home from a day out early, I had a seizure and fell (and have a cracking bruise on my head now), and we had to cancel plans with family. I rushed back into activity too soon, but I’ll learn from this and take it slower next time.

Point of this post? I dunno. Listen to your body, fight the stigma of others thinking you’re lazy, and do what YOU need to do.

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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 πŸ˜‰

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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This bad day got busted!

Today started off with my depressive episode feeling the heaviest yet, but the day got completely overturned with a succession of awesome things happening πŸ˜€

This normally never happens, we have the worst luck haha, so yay!

First thing…Halifax got in touch about my complaint

I complained about the way they treated me in terms of my title, that they don’t have anything outside of Ms, Mrs or Mr on their system, and also that the staff member had no sympathy for me having seizures / brain fog.

Well, they gave me a monetary compensation and far FAR cooler – THEY ARE ADDING THE TITLE MX TO ALL THEIR BANKS, NATIONWIDE!!! πŸ˜€

They said it might take some time, but they are actually doing it! And I got the first Mx card from a Halifax ever, which my mum pointed out haha, and how cool is that?!

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Woohoo! Thank you Halifax for being so good πŸ™‚

On top of that, when I text my mum the outcome she was amazingly wonderfully supportive and impressed. We then had a really, really awesome conversation about the name change, me being non-binary, how I felt etc etc.

My parents haven’t seemed particularly supportive throughout this, so this came out of left field and made me so hugely happy!! She said she’s gonna start trying to call me Dally too haha, which will be weird but awesome XD

Happy me’s from today!

To celebrate monies, we went out and explored somewhere we’d never been before.

I’m trying to push myself for further and further train journeys now my polarized ski goggles are helping so much with seizures. This was my longest journey yet at 35 minutes. Great day, and I got to go around four different pet shops – something I haven’t been able to do in YEARS!!

We found a fab new herp shop, and guess what? WE RESERVED A ROYAL PYTHON!

I’ve wanted a Royal for almost a decade haha, but have always opted for other snakes when we’ve been looking for one. The pet shop guy was showing us loads of herps though, and this Royal was for sale and it was so tame and he said it was a great feeder…and it just happened πŸ˜€

I’m collecting it this weekend when my parents come visit us, so we have a few days to sort the viv out. If you don’t like snakes, look away now and scroll to the red word SAFE!

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The snake in the middle is mine! ❀

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SAFE!

We also got a bite to eat at a Costa, and I found some new walking boots in a charity shop. Hells yea!

 

I only had four seizures whilst out, and we were out about 3.5/4 hours too πŸ˜€

Also check out this pic from the train on the way there…LOOK HOW NORMAL I LOOK!! I couldn’t ride trains for so long, and there I am just chilling reading a book!!

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Train back wasn’t quite as fun, as there were some obnoxious teenage girls sat opposite blatantly laughing at my goggles, but for a depressive episode I dealt with it really well, so I guess I can be chuffed with that πŸ˜›

Hope y’all have had as good a day as I have!

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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 πŸ˜› )

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 πŸ˜€

I am DAMN PROUD of all of this.

For 18 months seizures tookΒ 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). ForΒ 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)Β 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 πŸ™‚

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,Β and I’m currently in a depressive episode!!

I’m really damn proud of both of us πŸ™‚

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 πŸ˜€

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

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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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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 πŸ™‚

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 Β 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! πŸ™‚

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! πŸ˜€

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