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A quote

Every few weeks I am overwhelmed with how small and dark my life has become, because of seizures. I feel suffocated by all I have lost and all that I can no longer do. I spend a day crying and mourning for the life I once had. 

Today is one of those days. This is life with a disability. This is life with huge limitations. I’m not ashamed.

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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.

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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 🙂

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  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! 🙂

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! 😀

tollersbday6

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Damn it world…

Life is throwing so much BS our way XD

Obnoxious GP, the most insane toothache that has spread to my whole jaw, my partner is ill, we had a really stressful day today with a damn electrician, my seizures have been terrible…and have I mentioned ow toothache?! 😀

The electrician came today, and all we’d been told is that it would be a ‘quick job’, He gets here and tells my partner it’s going to take SEVEN HOURS!! Holy shit.

So for the entire time I’m sat in a room upstairs out the way, because oddly enough I don’t want to have seizures in front of a stranger in my own damn house…but eventually the lighting in this room fucks with me (normally we’re only up there for an hour max) so I fall into a huge seizure cluster with an awful panic aura.

And after all that, one of the things he did was switch the light in our bathroom to a new fitting and bulb. We’d mentioned to our landlord if it was gonna be a bright light could we swap it somehow, to try prevent accidental seizures, and the landlord didn’t respond. We now have this behemoth of a light in there that is SO FUCKING BRIGHT.

I immediately hung a notice on the door, to try prevent people accidentally leaving the light on and me going upstairs and being immediately triggered *sigh*

After the electrician had finally gone I had a nap. I  woke with some killer seizures (one lasting 3 minutes 25 – possibly my longest awake seizure to date?!) and in agony from toothache.

(me summed up in a photo today – blank, seizey, befuddled and in pain XD)

spoonz

AAAGH.

Thankfully stressful shizz is over now, and we have friends coming to stay this weekend, so that should be fun. I love being able to socialise and have friends stay now, for the past 6+ years I have been too mentally / physically unwell to manage it, so this is a fun achievement 🙂

Please send us healing and happy thoughts, we both feel like zomibies XD

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