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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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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 πŸ˜₯

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.

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Victorious yet anxious

Eight days ago I started using a new CBD oil, from CBD Brothers. 

I wasn’t feeling too hopeful, as I’ve tried five different CBD oils before and none have ever done that much.

Fast forward to this week, I’ve had THREE days with less than three seizures per day, and today (at 6:15pm) I’ve had just one seizure!!

This hasn’t happened in over 2 years!!!

Whilst I’m absolutely over the moon, it’s made me incredibly anxious too…will the NHS be even less interested in getting me diagnosed, if I’m having seizures less often and have found something myself that works? Seizures are the only thing the DWP seemed to take seriously – if I’m having less, will they reduce my benefit?Even though I’m still spending all day (other than an hour’s dog walk) hidden inside behind dark curtains, with the lights off…I can’t imagine they will listen.

I feel like such a dick, because here I am panicking about everything after one day of having just one seizure…but then I think hey, of course it’s going to feel strange and scary, for the last 2+ years you’ve been having dozens of seizures a day, and ANY type of big change can trigger anxiety.

So I’m just gonna have to treat myself gently, and focus on how INCREDIBLE it is that this CBD oil is helping my seizures. I could get a life back, and that is something to be celebrated, not feared.

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A scary day turned good

I woke up this morning and realised immediately something was not right.

I figured I was about to have a seizure (I have a lot of seizures just before and after waking), but when I got out of bed I didn’t have the balance to walk. I had to crawl to and up the stairs to go the loo, because I was literally tipping sideways when I tried to walk.

I had a few seizures but was still just totally spaced, out of it, and scared. I was having lots of seizure warnings (auras) and some seizures, but I wasn’t feeling better at all between them. I didn’t know if I should be heading to hospital or what.

I wondered if maybe I was about to have a really bad migraine, as in the past I’ve had similar auras to seizures for that, and the left side of my face felt numb. That also happened during a migraine aura in my teens. I took some extra strong pain pills just in case.

After an hour and a half of this scary ‘offness’, I finally began coming out of it. My brain began to clear, and although I was still spacey, it was different.

My final seizure was a very odd seizure where I wasn’t responding and was twitching, talking repeatedly about tadpoles – tadpoles?!?

My partner said I was lying staring blankly, alternating between saying “TADPOLES – TADPOLES – TADPOLES” and saying another phrase involving tadpoles.

I also had one of the seizures where I rubbed my eyes ferociously during – idk what that’s about. Afterwards I had huge red rings around my eyes!!

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And hey, who knew it – some disabilities are INVISIBLE!! This is *such* an important message to me, because so many chronically ill people with hidden disabilities constantly hear “but you don’t look sick!”

This could be from friends, family, or people who are being rude (intentionally or not) when you’re out in the world. Maybe you asked for a key to the disabled toilet at a library, maybe you have an assistance dog, whatever – to all the non-spoonies out there, you should never EVERΒ EVER say to someone “you don’t look sick”. Looking sick has shit to do with it, if you’re sick, you’re sick.

For the last 90 minutes before the photo above, I was having seizures and scared I would end up in hospital. Looking at this photo, you wouldn’t know that.

‘Looking sick’ has no meaning on how much a disability affects your life.

(</rant>)

Once I’d recovered from the morning, we *had* to get out to a bank.

My partner’s bank card is broken (we have money in the account and can see our account on a machine, but for some reason the stupid bank aren’t letting us withdraw ANY money?!), and because my partner hasn’t had a phone for over a month due to his dad not sorting it, we had no way to ring the bank…my phone had no credit, and we couldn’t get money to top up with!!

So today we had to get to a bank before it shut at 4pm, to get money out of a savings account so we could live until his account is sorted.

The bus journey’s weren’t the hell I was imagining, thankfully, and neither was the trip out. I actually only had one or two seizures, and we were able to go in a few shops, eat a meal, etc πŸ™‚

He was hiding the bubbles in his drink, because I have a tendency to accidentally fixate on them and trigger seizures!

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Afterwards we found this crazy ice cream booth in the market – flavours included salted liquorice, cheeky monkey, blue banana, and turkish delight! My partner got a turkish delight flavoured ice cream and now says it’s his favourite flavour!!

When we got back I was even able to clean parts of the house and join my partner walking two of our dogs.

So all in all today has been good…it just had a really awful start πŸ˜›