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I despise my parents

Parents should be the people you can rely on most in life to support you…I’m reaching breaking point with my parents yet again 😑

They’re completely unsupportive, which we already knew, but the worst is when I’m telling them something difficult (that I’ve had a lot of seizures, or that I feel extremely sad, that I can’t cope with how poor my quality of life is)…they don’t respond, they don’t care. I called yesterday afternoon and was almost in tears, because sometimes I’m just so overwhelmed by how limited my life is, so lovely…and they were not responding to things I said and YAWNING down the phone at me!

When I hung up, after an incredibly upsetting, frustrating phonecall, they didn’t bother to get in touch or ask how I was at all…my partner stupidly thought they might text and check in, I knew they wouldn’t.

No matter how many times I try explain what my life is like or how awful my seizures are, they can’t grasp it at all, there’s never a hint of understanding or sympathy. Anytime I talk about being disabled I’m met with silence, whistling, or a change of subject. It’s absolutely disgusting.

On some level I know they either care, or want to appear to others (family) as if they care (this charade is *hugely* important to them)…but I can’t do it anymore. I’m tired of having to parent them, of listening to their issues and sympathising with them, whilst I get nothing in return. I’m struggling to live with 12-25 seizures a day, mourning the loss of my independence & any semblance of a life…I just can’t do it.

I tried to ring my dad today to ask about a recording device. I got my PIP letter through (whole other story which I’ll try post about) and the only way they let you record the consultation (which I need otherwise I’ll remember none of it) is if the device creates two hard copies of the recording by the end of the assessment – cassette or CD.

I wanted to ask my dad if he had anything he could lend or any ideas what we could use; he let the phone ring then hung up, twice, and hasn’t attempted to get in touch since 🙄

I put up with an abusive childhood and forgave them. I put up with them mocking my self-harm as a young teen, and forgave them. I put up with them screaming at me when I disclosed my mental health condition, and forgave them. I put up with their entire lack of support or interest when I started having seizures, and forgave them.

But I’m gonna have to have a break, at least for a little while. Putting up with their shit is so bad for my mental health.

If I sound like a whiny dick, I’m sorry. I’ve just put up with too much shit for so long, and sometimes it’s way, way too much.

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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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Preparing for my appt

Guys I am SO SCARED about this appt!!!!

I’m not even totally sure why. The day’s gonna be a big day out, which will make me sicker so that won’t be nice…but I’m just so stressed that I’m gonna get fobbed off and not taken seriously again. I just want to get to the bottom of these seizures and to get a diagnosis. I don’t care if I have epilepsy or PNES, I just want to *know* so I can hopefully get treatment that works and we can have a better life…

I don’t want them to diagnose me with epilepsy if they’re non-epileptic seizures, because that means taking strong, pointless medication. But I don’t want them to immediately jump to a diagnosis of PNES based purely on my diagnosis of bipolar, because then my brain could be damaged by so many seizures or they could progress to tonic clonic if untreated. I basically want to be taken seriously and given the right diagnosis!!

I’m so scared about this appt XD

We went to my bf’s parents last night and my new welder’s goggles did really well with the various lights. I had an awful cluster partway through the night, which could have been because a light was flashing down the back/side of the goggles…but I was able to recover from that within about half an hour and enjoy the rest of the night again, slowly returning to normal 🙂

My partner filmed some of it for the neurologist appt too!