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Still waiting

Not much to report, things are the same.

I still don’t have my MRI results. It was almost 4 weeks ago now 🙄

When we phoned PIP on the 6th week (originally we were told we’d have an updated decision in 3), the person we spoke to said “what I’d advise you do is call again at the end of March if you haven’t heard anything”…😱😱😱 That would be twelve weeks!!!! 😡 So I think we’re going to phone them weekly just to try to annoy them into acting faster 🙄

And I haven’t heard about an appt for my EEG yet, despite the two referrals my neurologist sent 🙄

So.

I continue to have way too many seizures everyday, alongside battling chronic pain and bipolar disorder. I’ve been hiding inside, either not going out at all, or going out for 15-30 minute walks to enjoy the snow🙂

Because I haven’t really been going out, my seizures have been sitting at an average of 15 a day, but a few days back I had my lowest seizure day in about 10 months: 8 seizures in an entire day 😃

And that’s pretty much where we’re at.

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Hiding indoors helps

Because my brain’s been so screwy and I’ve been having so many seizures lately, I barely left the house this past week. I had 4 days holed up inside.

Finally, my seizure total for the day lowered, so our plan to hide away & let it reset worked. Just over a week ago I was having on average 24 seizures a day, after hiding indoors this lowered to 14 🙂

It definitely helps that we’ve discovered the room upstairs doesn’t trigger my seizures much at all. We basically live in one room of our house (because why move about and have to deal with lighting triggers?!), we were originally downstairs as that’s the biggest room in the house, but even with blackout curtains and strategically placed lamps it triggered a lot of seizures. Upstairs is SO MUCH BETTER. And weirdly it’s lighter up here, but because of where the light is it’s not a trigger.

Today though I thought I’d better go outside, go for a short walk. Be in the world just a little. I got some nice photos!

We were out about 45 minutes; I had 3 seizures on the walk, and 3 within twenty minutes of getting back home…lighting is such a fucking shitty trigger to have.

It’s also one that’s denied constantly by professionals…and no, it doesn’t have to be flickering/flashing, bright lights or changes in lighting for me are just as bad as flashing lights. Like yeah okay, I’m a special case & this is uncommon, but you don’t know everything about the brain and you can’t claim to know everything that triggers seizures 🙄😑

It’s been nice staying indoors and having less seizures as a result though. I’d forgotten what it felt like!

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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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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” 😑)

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 😃

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 😉

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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.

ouch

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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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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 😀

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!!! 😀

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 🙂

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 😀

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 😀

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 😛

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