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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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Anyone w/ MRI experience?

So yesterday I got my appt through for my MRI at the nearer hospital, and it’s this Friday 😳

My bf(/carer) rang today to ask a few questions, eg about dimming lighting, turning lights off etc. He also said “during seizures Dally may twitch or move their hand/arm – what happens in that situation?”, and the nurse said if I have seizure and move, the MRI is ruined 😳😫

She then asked how likely it was I’d have a seizure, and it’s like um…very? 😅

I mean travel there will have weakened me & caused seizures, the lights at the hospital will have trigger me, and even on a ‘good’ day for seizures (w/ no big triggers) that sees me having 10-15 seizures…so yeah, add in some BIG triggers and I’m definitely gonna have a couple in 20-45 minutes of MRI-fun-time!!

So the nurse was like ‘hmm, that is problematic’, and we’re here thinking WHY WAS NOBODY TOLD THAT I HAVE SO MANY SEIZURES A DAY, & STAYING COMPLETELY STILL FOR SO LONG WOULD BE AN ISSUE?! Like is that not kind of important?!? 😂

Seriously, if we didn’t know how useless the NHS is, we could have not phoned to let them know and just assumed it would be on my file!! Then we’d have got there and nothing would have been prepared and we’d be screwed!

The nurse asked my bf how reliable my auras are, and he said I get auras with about 70% of my seizures. So now the plan is if I have an aura during the MRI, I press the panic button. They’re also gonna possibly put extra padding around my head in the cage, to try keep it still if I seize without an aura 😫

My question to anyone with experience who has experience with an MRI – do you know if they can pause, during? Eg if I pushed the panic button, can they pause the MRI until I’m still again or would it be starting again?!

Good news though, they have said they can turn all the lights off in the MRI room, including in the machine itself. So at least that’s something 😅

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Happy Christmas everybody

We’ve had a truly awful lead up to Christmas. Thankfully myself and partner celebrated about 10 days ago and exchanged presents, because I was having a good day for seizures…I’m HUGELY grateful we celebrated then as we actually had a nice day!!

My seizures have been absolutely disastrous this past week, I’ve had two awful migraines…one was my worst yet, with me writhing in bed for hours in absolute agony. Today is another day with seizure clusters and me just feeling totally out of it. And to add to the awfulness, one of our dogs had to be PTS less than a week ago…sheesh. 

I hope your Christmas build-up has gone better than ours, have a lovely day 🎄

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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.