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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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Oh ffs

Thanks to the inordinate amount of stress I’m dealing with atm, it was always gonna trigger a depressive episode.

But it still really, really, REALLY sucks that it’s happened.

This is the last thing I needed right now 😞

I’m tired of my life being so, so limited. 

I’m tired of having dozens of seizures every day and living with all the after effects. Of living in fear. Of being unable to do anything for myself. Of having so little support from the NHS. Of benefits HEAPING stress onto my already difficult life. Of family & friends being totally oblivious to how awful everything is. Of my parents lacking all caring. 

I’m sick of everything…

I’m already scared of how this depressive episode is gonna go.. I hope it’s ended before Christmas 😭

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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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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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But you don’t look sick / disabled

This was me earlier this evening after a fairly small seizure. 

I’d come around a few minutes before, covered in drool, and I was totally out of it. Epilepsy ISN’T ‘just seizures’…all my seizures have a recovery time, from a few minutes to a few hours, and they often leave me exhausted.

This is why I get pissed when old people tut at me or comment for sitting in the priority seating of a bus – I have an INVISIBLE disability, judge not!!

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A really bad day for seizures…

Bleh.

My partner phoned our GP surgery today, because A&E informed us in the complaint that they would electronically send my GP a message telling her to expedite my neurology appt. We hadn’t heard anything, so he called to ask what was happening.

First the receptionist refused to talk to my partner about it, even though TWICE we’ve taken in a signed form stating he can speak on my behalf, and I was actively seizing at the time so couldn’t even speak!!!

Anyway, when we finally got around that she said that there was no message on the system from the ED, and so of course my GP hadn’t tried to speed up my wait for the neurologist…*sigh* ffs, come on 😡

She totally didn’t believe what we were telling her about the ED saying they’d sent a letter, despite my partner saying “I’ve literally got the letter right in front of me!” She kept asking for the date, what it was for, who it was from etc *rolls eyes*

Finally she said we could have a telephone appt with my bloody awful GP tomorrow, ugh…my partner can do all the talking for that, I want nothing to do with her 😥

Also I had my longest seizure ever recorded today, in the midst of a cluster.

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Epilepsy Awareness Mouth

Epilepsy is hugely misunderstood, underfunded, and can easily go missed or untreated for many years.

When most people hear ‘epilepsy’ they think of convulsive (tonic clonic) seizures. This is actually just ONE TYPE of seizure, and there are around 40! Tonic clonic seizures are also not the most common type seizure in people with epilepsy, but they’re basically all you see/hear about in the media.

Here are some infographics on warning signs of seizures: 

There’s also a huge misconception that epilepsy is ‘just having seizures’, and other than that you’re fine…this is hugely false.

Most seizures involve a postictal phase (feeling different AFTER the seizure), and this can last minutes, hours, or days. Many people (including me) also experience auras BEFORE the seizure, which can include visual hallucinations, feeling spacey, numb, ‘dead’ or disconnected.

After long seizures (3+ minutes) or clusters of seizures (typically 8+ seizures in 25 minutes) I will be out of it for 1-2 hours, And even after that I may feel tired or have a migraine. By ‘out of it’ I mean my brain won’t be producing memories, I’ll be taking gibberish, confused, get lost even in places I know extremely well etc.

Finally there is the impact epilepsy has on your life. I have 10-30 seizures a day, and I can’t do many activities…I can’t cook without supervision, I can’t leave the house on my own, I can’t go to the toilet or shower alone, and when I have seizures in public people don’t understand as I’m not on the floor convulsing!! I’ve had people shout abuse at my partner before, as they thought I was drunk/on drugs due to the fact I couldn’t walk straight and was acting funny!!

Finally there is basically no funding for epilepsy research, no cure, and your average member of the public has no idea how to recognise seizures or respond appropriately (people with epilepsy have been arrested & beaten by the police because they were acting strange – ‘unco-operative’ – after seizures). Epilepsy kills more people than most types of cancer, yet there is no ‘war on epilepsy’…this needs to change.