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12+ months to 2 days

Someone in the US got in touch with me yesterday. A few days ago they had their first seizure, ever, and were looking for support & advice.

Within two days of her first seizure she’d had a CT scan and an EEG. She was diagnosed with complex partial seizures (the same type they think I have) and will be starting meds.

All this within two days of her first seizure!

In contrast, next month will mark a year since my first appt with a GP about seizures. I was treated disgustingly, had to fight to get on the waiting list for a neurologist, and was told it would be a 12+ month wait.

I ended up in A&E due to seizures last October, which was actually kind of a good thing as it expedited my neurology appt, & I saw her 1.5 months later. I had my MRI 3 weeks ago, and am waiting for an EEG (my neuro’s sent off 2 referrals, but the local hospital isn’t acting on them).

The reason I’m posting this is because I’m so sick of abled people not understanding what a hideous monster the NHS is, and how disgusting it is. This person had two seizures total, I’m having over 300 a month and have had no support or treatment yet.

Whenever I try explain my hatred for the NHS, ableds ALWAYS bring up ‘yeah but the NHS is free and you have to pay loads in the US, so it is better’…my dad is TERRIBLE for this.

Firstly, you can say that because you don’t have a condition that puts your life in danger every single day, that you’re not being listened to or given treatment for.

And secondly – just because I complain about the NHS doesn’t mean I want rid, or would rather pay for healthcare. That’s not the only two options there are (shit free healthcare or awesome healthcare you pay loads for). How about an NHS that gets more funding, where treatment is faster and Dr’s care + are educated? Where instead of waiting 12+ months, everything was sorted in 4-6?

That shouldn’t be too much to ask for.

I know quite a few spoonies in Canada. One has suspected simple partial seizures, and is setting a neuro, having an EEG & MRI within 2 months of their 1st appt. Their healthcare is free and so very much better than ours.

It’s not an either-or, it’s a ‘the NHS needs improving because this isn’t okay’…and frankly, if you think it is good enough as it is, because you don’t have a disability, you’re just ignorant & ableist.

I am so SO tired of living with so many seizures. I’m so desperate for help from the NHS, yet I just keep getting treated like shit.

And when people try argue that UK spoonies have it good with the NHS…I just can’t.

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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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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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We kinda-not-really won!

If anybody remembers my disastrous negligent A&E visit (that was NOT my fault, I DID NOT want to go!!) , we got the result of the complaint that my mum was handling through a few days ago.

Now bearing in mind PALS isn’t there to help the patient at all but is there to cover the NHS’ arse, we got a good result 🙂

I now have it on paper that medical professionals have confirmed I have seizures, that they witnessed them, AND that my seizures are nothing to do with my bipolar! Two of my biggest issues with their treatment was that a) they said I had no seizures since arriving at the hospital & no staff witnessed any seizures, and they said that was the reason they released me without treatment; and b) they told my mum that my ‘episodes’ (seizures) were most likely caused by my bipolar disorder.

So whilst they didn’t take any notice of our complaint, I at least have medical evidence of seizures now, and they changed what they were saying in my favour 😂

I also got this in regards to the awful Dr that discharged me (the bit above point 11):

Kinda missing the point there – my issue wasnt AT ALL that he asked about PIP. It was that he then said in a derogatory fashion that I was ‘too young’ to be on PIP and should be ‘getting out in the world’. I made that extremely clear and you just decided not listen!

Everything to do with the NHS is gross….

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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!!!

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Smashing stigma: shitty GP!

Oh we had a funny appt today 😀

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).  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 🙂