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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!

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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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We don’t have much money…

…and that’s okay!

Currently we can afford rent, bills and food. So we’re good! In the past we’ve had very very little money…I’m talking need to use a food bank, can’t afford ANYTHING little money. 

It was scary but it means we appreciate what we have, and money is never taken for granted. 

 I get so frustrated with people who are constantly bitching about being poor when they have so much, or who don’t deserve the money they have…life isn’t about money but I’m so damn sick of these idiots 😒

For example my parents can’t stand to hear us talk about money, and every time it’s brought up it’s like we’ve invited them to a challenge?! Like, it’ll come up naturally somehow – they’ll tell us ‘just buy it!’ about something vaguely expensive I want (eg £20 dog harness, or a video game) and I’ll say “oh no, we can’t afford it atm”…and it’s like a little switch flips to CHALLENGE ACCEPTED!!

So even though they: own a gorgeous 3 bed house for the 2 of them, have 2 cars, 2 apartments, have been on 5 holidays THIS YEAR, have bought 2 new cars…they immediately go on the defensive to insist they are poorer than us 😩

And god help us if we say they’re not, because then we get lovely ableist arguments, such as – well we have to go to work (great, wish I could work!!).

It shouldn’t rattle me, but this literally happens EVERY time I speak to them and it’s so fucking annoying! We’re poor, we have very little income, we haven’t had a holiday in 5yrs and got excited recently because we bought a £27 game, our second new game of 2017…we spend £20 on each other for Christmas/birthday, and even though we rarely go out so spend money that way, due to seizures, we never feel bad about it! We never even bring money up!!

Or my bf’s brother. He’s in his early 20s, lives with his parents, pays no rent / bills, and has a full time job…yet he spends all his money on drugs and (to a lesser extent) alcohol, so his parents always lend him money!!! Like, WHAT?!?

Life is so fucking unfair 😅

Meanwhile we’re having to fight tooth and nail to get the benefits we’re entitled to, I’m having people left and right call me lazy/telling me to get a job when I’m having 20+ seizures a day and can’t leave the house…ugh. Spoonie life guys, sometimes it just really gets to you…

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We kinda-not-really won!

If anybody remembers my disastrous negligent A&E visit (that was NOT my fault, I DID NOT want to go!!) , we got the result of the complaint that my mum was handling through a few days ago.

Now bearing in mind PALS isn’t there to help the patient at all but is there to cover the NHS’ arse, we got a good result 🙂

I now have it on paper that medical professionals have confirmed I have seizures, that they witnessed them, AND that my seizures are nothing to do with my bipolar! Two of my biggest issues with their treatment was that a) they said I had no seizures since arriving at the hospital & no staff witnessed any seizures, and they said that was the reason they released me without treatment; and b) they told my mum that my ‘episodes’ (seizures) were most likely caused by my bipolar disorder.

So whilst they didn’t take any notice of our complaint, I at least have medical evidence of seizures now, and they changed what they were saying in my favour 😂

I also got this in regards to the awful Dr that discharged me (the bit above point 11):

Kinda missing the point there – my issue wasnt AT ALL that he asked about PIP. It was that he then said in a derogatory fashion that I was ‘too young’ to be on PIP and should be ‘getting out in the world’. I made that extremely clear and you just decided not listen!

Everything to do with the NHS is gross….

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A tough day

Stress and seizure rage today 😩

Phoned PIP today to tell them about my seizures (we were waiting until a medical professional had acknowledged they were seizures, but that’s obviously going to take too long)…figured if they won’t acknowledge them as seizures because I’m not diagnosed, they’ll at least see how damaging they are to my quality of life. I was already only one point off the enhanced rate of PIP, so I guess with seizures they’ll have to qualify me.

My partner also called a company about a disabled bus pass. It seems I’ll qualify new, but the easiest way is to wait for PIP’s reassessment, and then use that as evidence. Bloody hell.

Anyway. I got some nice photos (of me and a burnt down house) once everything had stopped being so screwed by seizures.

Sad confused seizey me trying to take a video

Collected re-grouped me, that’s better!

I went off in a rage for an hour. Don’t remember much, cut my finger somehow, then phoned my partner and we talked, eventually meeting up. I hate how abusive I am around seizures with seizure rage, I fucking hate myself for it 😫

Took some nice photography when we were back together though.