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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?! ๐Ÿ˜€

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 ย 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 ๐Ÿ™‚

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

spoonz1

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Smashing stigma: shitty GP!

Oh we had a funny appt today ๐Ÿ˜€

I had blood tests done about a week ago, so I can finally be put on the waiting list to see a neurologist in regards to my seizures. If they are epileptic seizures I can then be put on medication to try stop them; if they’re non-epileptic seizures at least I know they’re not fucking with my brain, and we can try find ways to manage them.

The GP today was a HUGE bitch. So much so it was funny!

The appt started with her asking if I could take my goggles off, to which I replied I could, but the polarized lenses help prevent seizures. Strike one against me, she didn’t know what polarized lenses were and obviously hated feeling less superior.

I began telling her about the seizures (telling her about my auras, symptoms during and after). ย I told her about CBD oil, and that we’ve identified several seizure triggers (she didn’t ask what they were or give me time to tell her them).

I showed her a recording of a seizure, and she responded with “Well what’s supposed to be going on here, because it looks like you’re just watching telly”.

OMG hahaha, what an idiot!! When I’ve just told you all the symptoms, and wow well done for showing you have no knowledge of seizures as anything other than tonic clonics / grand mals!!

This was the video btw

She spent ten minutes (meaning the appt ran over) talking about my MH. She kept trying to belittle or insult me, using my MH as a weapon, and got increasingly angry when I refused to be belittled or ashamed.

Some of the questions include

  • When was I last on medication
  • When was I last seen for my mental health
  • Why aren’t I receiving help now
  • What is my mental health like now
  • Why do I think my MH is better now
  • (weirdly) Did I go to a public school
  • (after staring VERY pointedly at the scars on my arm) Do I have a history of self-harming? Why? For how long?

I was able to answer these questions extremely confidently, and this also annoyed her. Me and my partner joined as a team to explain the stress of appointments were extremely detrimental to my MH, and the fact they never helped anyway meant all they did was make me worse. I am doing better now, mentally, than I have in almost a decade.

She then asked me if I worked and when I last worked, and did not approve of the fact I hadn’t been able to work due to disability for so long.

After this she began talking about my seizures, but obviously referring to them as “episodes”. She began telling me that they may not be “true seizures”, and I interrupted to say we were very well aware about non-epileptic seizures, but obviously it’s worth seeing a neurologist because if I do have epilepsy, I can get treatment.

Everytime she spoke about epileptic and non-epileptic seizures, she referred to them as ‘true’ and ‘not true’ seizures. Well done for perpetuating the stigma against PNES!!

She said we might want to collect more video footage before the neurologist, and we said we had about a dozen videos spanning a year. She began to say we might want to record how many seizures I have a day, and we interrupted her to say we use a seizure tracking app to record how many I have, triggers, auras etc.

By the end of the appt she hated us, because I wouldn’t be embarrassed about my history of MH, and we were so knowledgeable about all my conditions. We (my partner and I) came out laughing, and feeling like a really solid team ๐Ÿ™‚

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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!!

weekend5

weekend2

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 EVERย 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 ๐Ÿ™‚

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 ๐Ÿ˜›

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Why must I be out in the world?!

We signed up to the new GP surgery today, the other one in our town.

We get there, and the receptionist says that although we’ll be signed to this surgery, most appts will be at the other surgery, a 25 minute bus ride away…whyyyyy?!

Apparently you can see Dr’s at our surgery, it’s just a longer wait as there are fewer appt slots there. We said that was fine as the previous surgery left you waiting 3 weeks for an emergency appt XD

Even so, apparently we have to have a ‘meet and greet’ appt with the GP before we will be registered, and that has to be at the far away surgery…this sucks because I’m already going to freaking out (I haven’t had a physical appt at a surgery in a few years, and this will be a new surgery with a new Dr!) and the bus will make me very sensitive seizures too. Add some stress and I’ll be fucked >__<

The receptionist said the lighting was dim at that surgery too, when I asked, but my bf still wants to try and get the meet and greet at the nearby one. Idk.

Filling the questionnaire in was fun, considering all the information they demanded from you, and I had no idea what to put for epilepsy…I’m 98% certain I have epilepsy (as my seizures are light triggers, no t tonic clonic, and I have auras – all are incredibly rare with NES), but as I’m not diagnosed I couldn’t circle it.

In the end I circled everything, and put seizures under investigation, which is what a previous Dr wrote on my fit note.

Whilst we were out I also goggled up and got to go in the second hand bookstore, where I haven’t been able to go for years due to seizures and lighting. I love this place, and found a very old interesting dog breed book ๐Ÿ˜€

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Bad bits and good bits

Today got off to a shit start, with my GP surgery being major dicks yet again!

My bf phoned up to ask if the surgery could legally do a blood test if I was having a seizure. ย As far as we knew I was on the waiting list for a home test, but we’d been waiting for months and thought with my new polarized goggles I could get in and out fairly easily…we just wouldn’t want to get there, me to have a seizure, and them to say “we can’t legally do it now, come back another day!”…and it’d NEVER be done!!

The receptionist was actually disgusting. She treated my bf like shit. She told him he was wasting their time asking this question, that “there’d be Dr’s there” if I did have a seizure, and – the best bit! – snapped “You’re not having a home visit, if that’s what you’re after!”

Firstly, that IS NOT what we were after, secondlyย according to the previous receptionist we spoke to we were already on that list!!!

Thanks for letting us know we weren’t at all XD

After receiving no answer, we hung up. We then phoned Epilepsy Action’s advice line, who were almost as unhelpful and out of date in their information…according to them seizures cannot be triggered by fluorescent lighting?!?

Quick google search showed me many others were also triggered by fluorescent / LED lighting, and this post on an epilepsy forum hit home as I share a lot of these triggers!

Anyway.

The benefit of this was that we discovered a new GP surgery in our town. It’s in a small house, so has normal lighting, and means I don’t have to deal with the shitty staff anymore…yay!

Today I went out for 3 hours, which was really fun! It resulted in a high number of seizures (21 simple partial, and 3 complex partial), but without my polarized goggles it would have been much more, and I wouldn’t have been able to do anywhere near as much ๐Ÿ™‚

Here’s me in a brightly lit shop!!

spoonie

And we even had a meal at a pub ๐Ÿ˜€

And an ice cream with a view for desert!!

Awesome day ๐Ÿ™‚

A few hours after we got back home, my brain crashed and I had to take a codeine for a migraine…but it was worth it!

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Seizures aren’t all the same!

Did you know there are over 40 different type of seizures?

When people hear the word epilepsy, they think of people dropping to the floor and shaking…but that isn’t even the most common type of seizure!!

The most common type of seizure is complex partial (also called focal impaired) seizures; where the person looks conscious, and may move or wander, but in actual fact they have lost consciousness. Think of the phrase “the lights are on but nobody’s home”!

I have simple and complex partial seizures. I find on an almost daily basis that because my seizures don’t involve dropping to the ground, people don’t take it anywhere near as seriously. This pisses me off, because I deal with the following yet I have it ‘easy’?!

  1. Over a dozen seizures daily that last 1-2.5 minutes at a time
  2. Clusters, where I have half a dozen seizures in a 20 minute period
  3. A complete loss of control about where these seizures happen…it can be mid sentence, when I’m eating, surrounded by people, staring at someone etc
  4. Feeling exhausted afterwards
  5. Feeling spacey, slow-brained and confused
  6. After complex partial seizures I act erratic, and may shout swear words, burst into laughter, or gesticulate hugely with my hands. People have called me disgusting, because they assumed I was drunk / on drugs
  7. Before about 70% of my seizures I experience an aura, which lets me know a seizure is incoming. My auras vary from flashing white specks (the most common), to a panic aura. I feel flooded with panic, and often end up hyperventilating and crying, THEN having a seizure
  8. Losing large chunks of memory, hours at a time
  9. Not being able to go out without wearing gigantic ski goggles
  10. Having to avoid bright lights, flashing lights, arcades, the cinema, and bodies of water
  11. Having several migraines a week, because my brain is mush from all the seizures

Epilepsy is anย invisible illness. There’s so much suffering going on under the surface that passers by don’t see.

For anyone interested, this is me during a simple partial seizure

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Episodic Dyscontrol Syndrome

Recently we discovered I fit all the criteria for Episodic Dyscontrol Syndrome.

The rage ties into my seizures, and previously I had been calling it seizure rage. My partner did some research into this the other day, and we discovered EDS. Whilst seizure rage is less extreme anger, and not usually directed at a person, EDS is uncontrollable rage, which focuses on one person, and causes the sufferer to lash out verbally and physically.

This is me.

Usually it’s something small that triggers the episode, something that may mildly frustrate the person, but the EDS makes you fly off the handle. Because you can’t control the anger or your behaviour, but you remember it afterwards, the sufferer is often left with crippling guilt.

THIS. IS. ME!!

I’ve never been an angry or violent person. Sure, in mania I might be very irritable, but the rage and violence I experience with my seizures is unbelievable…and as a result the guilt is overwhelming. It leads to depressive episodes, and stress which causes more seizures.

Since finding an explanation for my behaviour, we both feel much better. I still feel like shit after episodes, but it’s nice to have a reason. Now if only we could find a way to manage it…

I would hope that CBD oil could reduce it, but it doesn’t seem to. CBD oil has taken my seizures from 25-35 seizures a day to 8-15, but the EDS symptoms continue…