2

Still waiting

Not much to report, things are the same.

I still don’t have my MRI results. It was almost 4 weeks ago now 🙄

When we phoned PIP on the 6th week (originally we were told we’d have an updated decision in 3), the person we spoke to said “what I’d advise you do is call again at the end of March if you haven’t heard anything”…😱😱😱 That would be twelve weeks!!!! 😡 So I think we’re going to phone them weekly just to try to annoy them into acting faster 🙄

And I haven’t heard about an appt for my EEG yet, despite the two referrals my neurologist sent 🙄

So.

I continue to have way too many seizures everyday, alongside battling chronic pain and bipolar disorder. I’ve been hiding inside, either not going out at all, or going out for 15-30 minute walks to enjoy the snow🙂

Because I haven’t really been going out, my seizures have been sitting at an average of 15 a day, but a few days back I had my lowest seizure day in about 10 months: 8 seizures in an entire day 😃

And that’s pretty much where we’re at.

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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.

2

Broken

I had another broken day today 🙄

Yesterday we tried to have a nice day, it was an epic fail…I almost ended up in hospital due to having so many seizures, the day was awful & very much ruined. I was left asking myself why I even try to do anything/leave the house anymore 🙄

Being so physically unwell obviously takes a toll mentally, and after yesterday, today I’ve just been struggling hugely. I wanted to hurt myself, I felt suicidal, same old bipolar crap. Add to that a pet died unexpectedly and my bf’s parents are being absolute dicks…and yeah, it’s been a bad day.

I started to feel a little bit better this evening. I just get tired of all my disabilities have taken from me. I get tired of not being able to leave the house, or have a life, and yesterday showed that so clearly.

I posted this photo yesterday online. This was me after I’d attempted to leave the house; I’d had 29 seizures, felt dreadful, and a migraine had hit me as a result of the high number of seizures. I might have an invisible disability, but that doesn’t make it any less real…

I can’t remember if I posted about this already or not (I have no memory anymore, my brain can’t really produce new memories very well) but my bf called the hospital about my MRI results, and also asked about my EEG. He was told by the hospital that’s too far for us to travel that they have sent off two referrals to the local hospital for my EEG, because they want it done asap, but the local hospital just aren’t acting on it…how is that okay?!? 😩

I’ve had significantly less seizures today but my mood is in the pits…I’ll take that over the other way round, I guess!

0

A quote

Every few weeks I am overwhelmed with how small and dark my life has become, because of seizures. I feel suffocated by all I have lost and all that I can no longer do. I spend a day crying and mourning for the life I once had. 

Today is one of those days. This is life with a disability. This is life with huge limitations. I’m not ashamed.

2

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 🎄

2

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!