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.
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 🎄
Not much to say other than today I have my appt with the neurologist…and I’m so, so scared!!!
We’ll be getting picked up in half an hour, then driving 60 minutes to the hospital…here’s hoping it goes okay 😩
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!
Thanks to the inordinate amount of stress I’m dealing with atm, it was always gonna trigger a depressive episode.
But it still really, really, REALLY sucks that it’s happened.
This is the last thing I needed right now 😞
I’m tired of my life being so, so limited.
I’m tired of having dozens of seizures every day and living with all the after effects. Of living in fear. Of being unable to do anything for myself. Of having so little support from the NHS. Of benefits HEAPING stress onto my already difficult life. Of family & friends being totally oblivious to how awful everything is. Of my parents lacking all caring.
I’m sick of everything…
I’m already scared of how this depressive episode is gonna go.. I hope it’s ended before Christmas 😭
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.
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….