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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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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.

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Complaint & tattoos

PALS have said that they can’t see a referral to a neurologist on my file…which is very odd 😑

The GP sent off the referral 2-3 months ago, so…?

 My partner phoned our GP surgery this morning to ask if there was a referral on the system, but they wouldn’t talk to him…which is just UGH, because when I filled in the registration forms at the surgery, I wrote at every suitable bit that he should be added on the system, I gave consent for him to talk on my behalf, AND I checked with the GP too!!

So now we have to go into the surgery today to ask about the referral, and I’ve written a note that says ” I [name] once again give consent for my partner and carer [name] to talk both on the phone, and to Doctors, on my behalf”. I even included my old and current name and signature, because I’m changing my name on the system today too. 

It’s my birthday in a week and I’m getting two tattoos for it woop woop!

I’m so insanely excited, I haven’t been able to get any new ink in years, because of seizures and what not. I’ve planned these two tiny tattoos so well too haha 🙂

My appt is on Friday, the guy doing them is lovely and I had two of my others done with him. He doesn’t take bookings over the phone anymore as he takes a deposit due to idiots not turning up, so at first we thought we were gonna have to go elsewhere (bit too much to have to travel in to book them, then again for the tattoos). But my partner called him back to ask how long his waiting list was, and when he found out I was disabled he was so lovely and booked us in there and then, no deposit 😃

I also got some new CBD oil to try, and it arrived today. I’m so desperate for relief atm, and the NHS isn’t taking me seriously, so I’m trying a different CBD company in case it helps more. CBD Brothers is supposed to be one of the best in the UK, so fingers crossed!

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A&E, nice staff & negligence

I’ve been having an awful time for seizures.

Ever since autumn hit, and the days are mostly grey and the sun sets earlier, I’ve been having 10+ seizures MORE a day than I usually do.

Saturday was awful. Mid afternoon I was out of it for over an hour, with back to back seizures and being unable to respond or understand anything between them. I was having seizures regularly all day.

At about 8pm we called 111, making it clear they were NOT tonic clonic seizures and I was not in non-convulsive status epilepticus right now. We said we were just concerned abs didn’t know what’s to go four help. The guy said he wanted to call an ambulance to bring me in, and when we said we could get the train there so as not to waste their time, he said he wanted us to travel in am ambulance.

We arrived at A&E at 9.30pm. The paramedics were lovely – asking us about our pets and really putting me at ease. They turned the lights off in the ambulance and put the blue lights on so add to be nicer on my brain. I had four seizures on the way to the hospital.

We waited about four hours at A&E then were seen by a Doctor. He did some examinations, then turned the light off in the cubicle so he could do exams where I’d need to remove my goggles. He did this himself and I didn’t ask him to do so.

He did a pupil reflex test where he shone a light in my eyes, which immediately triggered a seizure. He timed the seizure (45 seconds) and asked my partner if how I was behaving was typical – staring, unresponsive, picking at things.

When I came round he said the light was clearly a trigger, and that these were obviously absence seizures. We told him how I feel before, during, and after, and he said it was all very typical of seizures.

It was so nice to be listened to and understood!

He wanted me seen by a neurologist, but there was no way to do that right now, so he said he’d admit me to a ward and I’d spend the night there.

We were waiting in that room about three hours. Within the first hour I had a blood test, ECG, gave urine, and had blood pressure & temp taken for the 4th time. 

At about 4am we were moved into the hallway. Here the fluorescent lights were extremely bright, and I’d already had 45+ seizures that day so my brain was mush. I began to feel very out of it,  had seizures, felt awful and was panicky. I got a really bad headache and my partner got me some paracetamol. The hospital was full of noisy drunk people which was not being my head. I remember tearfully begging staff to put me somewhere dark.

Just before 5am I was moved to the ward. A consultant Dr came and did reflex tests – no lights, just tapping my joints, getting me to squeeze his fingers etc – he asked for an overview of why I was there and looked at my notes. He commented that a temp reading said I’d had a fever earlier, which was ‘weird’ but ‘probably nothing to worry about’, although he wanted to do a chest xray the next day.

At 5.25am I was left to go to sleep, although it took a long time. I was next to the brightly lit hallway which didn’t help, and the nurses walked about singing, shouting to each other and patients etc.

At 7.15am a male nurse said “turning the lights on ladies”, and fluorescent light flooded the room. I’d slept with my face under a jacket, so I emerged and grabbed my wide brimmed hat and goggles. Almost immediately I started having seizures – the lighting was an obvious trigger, along with only getting one hours sleep, stress, the heavy seizure day the day before, and I hadn’t eaten in 20 hours.

I spent the next 45ish minutes out of it, seizing, and feeling terrible physically – trembling, exhausted, nauseous. I deliberately wanted to ask for help from one of the nurses walking past, but wasn’t aware enough and couldn’t manage words. I finally tearfully stammered to one “the lights are really getting to me”. He turned the light directly above me off.

At another point the nurse who had been assigned to me for the day said “welcome back” as I came around from a seizure. Otherwise I was ignored.

At 9am a Dr and someone else came to see me. He asked how I was, and all I could think to respond was “okay…”. He asked where I lived, and it took me about 10 seconds to work it out and reply. He asked what I did for a living, and I couldn’t work out what to say so said I receive PIP. He then said something truly disgusting: “You’re too young for PIP, no? You should be out and about in the world”.

I was unfortunately too ill to respond and tell him that disability has no age limit. And don’t you think I would truly love to be able to get out in the world, rather than living a life of misery?

He finished with “you want to go home today, yes?”, and I confusedly said yes. Because I did, after I’d Breen seen by a neurologist and gotten help. He then said I was released to go.

The nurse assigned to me came and asked if I had someone who could come pick me up. I was still confused, but said my partner. I called my partner and didn’t know what to say other than come to me haha.

I sat there for a while, not understanding at all what was going on, then gathered my things and tried to find someone to ask if I could leave and wait outside. I just wanted out. I stood in the hallway for several minutes, but was too out of it to understand how to catch anyone’s eye and ask, and everyone just walked past me. I had a seizure, then walked further up the corridor and finally said to a passing woman “excuse me, if I’m being discharged can I go wait outside?” She checked with a nurse and said yes.

I left the ward and walked down a few corridors before having to stop, very confused, and have a seizure. Once I’d come around I started walking, stumbled across an exit sign, and left.

I called my partner to let him know where I was heading, then called my parents. They were furious about how I’d been treated, and my mum insisted on calling the hospital. Staff were happy to speak to her about confidential information to do with me without asking for my consent.

My mum was told several HUGE lies.

  1. That I’d had a CT scan, and the results showed I wasn’t having seizures. This didn’t happen. I never had a CT scan. I didn’t have ANY examinations that could identify seizures. When my mum called back to confirm this, she was told it was a ‘mistake’ and that they can’t be expected to know details of 43 patients at once!
  2. They said that no staff had witnessed seizures in 12 hours of observation, and the reason I was released from the ward was because I hadn’t had seizures that morning. I was able to tell my mum I’d been having many seizures since 7.15am, and one staff member actually referred to them by saying “welcome back”. There were also the paramedics, two A&E nurses, and the A&E Dr who had witnessed seizures.

My mum was furious.

She’s filing a formal complaint for us, so we can rest and recover from the experience. I’m still having a ton of seizures and feel awful everyday, and medical professionals are still refusing to help. 

And I’ve learnt to never go to A&E for my seizures again!!!