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Things feel like they’re coming together

I had my ECG & am waiting for the results now. I think as soon as they come in I’ll have to have a GP appt, & then I can ask for a printout of the cardiologists report so I can have my own copy of that too.

They give you a diary to fill out every time you experience symptoms; it had 25 slots & by the end of day 1 I had completely filled it 😂

I had numerous seizures related to my heart rate & lots of heart rate spikes whilst wearing it, so let’s hope I get a knowledgeable cardiologist who has actually heard of postural orthostatic tachycardia syndrome, & who will write a good letter to my GP!! It will also be my first GP appt seeing my Dr in my wheelchair, & even though my chair has been fantastic & given me some semblance of a life back, I’m worried how my GP will react to it, because y’know what the NHS is like 🙄

I finally have my disabled travel (rail) pass on the way, yaaay. And that should be here in 4-6 days 🙂

I’m still waiting for my 24 hour EEG appt to come through…I guess it’s good to double check for electrical activity, but given I’m 90% sure my seizures are physiologic (caused by lack of oxygen to my brain & vastly dropping blood pressure, due to POTS), I’m not too worried/excited about the results. I kinda wish we’d had the opportunity to fricking talk with the neurologist, so I could explain about POTS, but again – y’know what the NHS is like! My first neurologist left after my first appt last year, & we haven’t seen/spoken to another since as there’s apparently a shortage of neurologists…so basically he has no idea about any of my new medical diagnoses or investigations.

Also we tried to swap which hospital my neuro appts get referred to…basically the stupid fucking Dr sending the referral last summer (who was an uber bitch!) sent me to the neurologist hospital that is 90+ minutes away, rather than the one that is 15 minutes away…like?! 😂

When one of the nurses told us we could have been sent to the local hospital, & asked why we were having to travel so far, we were flabbergasted! We asked her how we’d go about switching, and she said it would be easy & to do it through our GP surgery.

We get in touch with them & start the ball rolling, & I get an email a few days later saying if we ask to be switched, the whooole process will start from scratch & I’ll be waiting ten months to see a neurologist!!! What the fuck?! But this isn’t even our fault?! 😂

It should be noted that Dr Footitt has never met me & only knows my case from notes on my file…so why a Dr at the nearby hospital couldn’t pick it up from my file like he did, I have no idea 🙄

The only reason it’s worth us switching is because we literally *can’t* get to that hospital unless we get a lift, which requires my parents taking a day off work…and obviously that’s not really an option.

So. We’re gonna try get the EEG out the way & get the results, then start the process of switching…eesh 🙄

Mentally I’m still a huge mess, & all the issues last February with benefits & having to have so many appts with the NHS (BOTH of which trigger mood episodes, panic attacks, & scheme anxiety) have still left me battling my bipolar in a way I haven’t had to in so long. And yes, it’s mid-July now, five months later, and I’m STILL unbalanced from that 😥

Currently I’m in a depressive episode that started at the end of June, but I’m fighting hard & Lyle is doing all he can to help…we’ll get through this!

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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!