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Things have been difficult, but I am back!

An angry update against the NHS 😉

I first went to see a GP about my seizures last summer.

I saw an awful old witch of a Dr, who spent the 10min appt glaring at the scars from decade-old self harm on my arm, saying my seizures just looked like I was watching TV, & asking repeatedly about my mental health.

We later found that on the neurology referral this Dr had already said I was having “psychogenic seizures” (that is, triggered by emotion, stress, mental illness – we’d told her my emotions didn’t affect my seizures, of course). She also mentioned in the referral that I had self harm scars in full view (it was summer, I was wearing a t-shirt due to the heat!!), & referred to my seizures as “funny turns”.

Since then, when discussing my seizures with *every* GP, it was a battle to remind them my seizures weren’t diagnosed as ‘psychogenic’. I had one GP tell me numerous times “psychogenic seizures aren’t voluntary, it’s a fight or flight response”, “you can’t help it, you’re not doing it on purpose”, & she wanted to refer me to a psychologist to help me overcome “past trauma” that was triggering these ‘episodes’.

I wanted to scream!

STOP INSISTING THEY’RE PSYCHOGENIC SEIZURES, ESPECIALLY WHEN YOU LITERALLY JUST ADMITTED YOU KNOW NOTHING ABOUT MH. STFU!

My neurologist was the only one who was respectful. She wasn’t happy at all with how long I’d had to wait, that I’d been left alone like this, & that the GPs had jumped to psychogenic seizures.

In the year-long wait it took to get an EEG, I discovered that I had POTS. That is, Postural Orthostatic Tachycardia Syndrome.

And hey, what do you know, there’s an entire bracket of non epileptic seizures that was overlooked simply because I have bipolar disorder!! Physiological non epileptic seizures, triggered by conditions that cause physical changes – usually blood pressure, oxygen to the brain, or blood sugar…OH HELLO POTS!!

(this is my hr when I stand up)

After being told, repeatedly, that my seizures were ‘all in my head’, & that my mh is the cause, it turns out they’re triggered by a physical condition. And once again I had to discover that myself, because the NHS missed it completely. They were too busy blaming my bipolar disorder for everything 🙄

All the symptoms I’d been to the Dr’s about (heart palpitations & dizziness first, in 2010), I was told were caused by my mental illness. I’ve been getting sicker & sicker, and nobody would listen or take me seriously…I have a mental illness, obviously that means I’m immune to physical conditions?!

This way of thinking is absolutely not okay!!!

I shouldn’t HAVE to research & diagnose all my fucking conditions. I shouldn’t have to find ways to prove them to Dr’s at appts…Dr’s who then become so worried, because my HR is so high when I’m just sat in a chair, that they push me for an emergency ECG in case my life is in danger!!

We can’t keep blaming any and all symptoms on MH, simply because the person has a diagnosed mental health condition/s. I’ve been left totally alone with zero support for my seizures (dozens every single day) for over a year. My life crumbled to nothing. I’ve had falls, black eyes, bruises, dislocated fingers in falls…and it was blamed on my MH, it was blamed on me!

Now I know I have Postural Orthostatic Tachycardia Syndrome, my life has actually improved. I know why my seizures happen, & although I can’t prevent them, I’m able to go out and enjoy more because I have a wheelchair now. For the first time in years I can be around light, I can go to museums, I can eat out. The wheelchair keeps my heart rate lower than if I was standing/walking, it allows me to rest when needed, & if I have a seizure because my HR gets too high, I can’t fall. It’s AMAZING, and it all got missed.

For a year I couldn’t go out, socialise, go shopping. I haven’t been able to go to the cinema since 2015. I was living in darkness, because we thought it was the light triggering my seizures – think about it, when you’re around lights (sunlight through trees, fluorescent lights, flashing lights), you’re outside, which means you’re standing & walking. Which meant I was having seizures. I’m also more photosensitive due to my POTS, so we weren’t that far off the mark.

For over a year I didn’t go anywhere, I sat in the dark…and I was left like that! Because the NHS jumped immediately to psychogenic seizures, because I have a mh condition. I missed out on a year of my life!

Yes, I am pissed off. No, this isn’t okay.

Thank god me and Lyle are strong, are resilient, & have found a way to make life liveable!

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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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Hiding indoors helps

Because my brain’s been so screwy and I’ve been having so many seizures lately, I barely left the house this past week. I had 4 days holed up inside.

Finally, my seizure total for the day lowered, so our plan to hide away & let it reset worked. Just over a week ago I was having on average 24 seizures a day, after hiding indoors this lowered to 14 🙂

It definitely helps that we’ve discovered the room upstairs doesn’t trigger my seizures much at all. We basically live in one room of our house (because why move about and have to deal with lighting triggers?!), we were originally downstairs as that’s the biggest room in the house, but even with blackout curtains and strategically placed lamps it triggered a lot of seizures. Upstairs is SO MUCH BETTER. And weirdly it’s lighter up here, but because of where the light is it’s not a trigger.

Today though I thought I’d better go outside, go for a short walk. Be in the world just a little. I got some nice photos!

We were out about 45 minutes; I had 3 seizures on the walk, and 3 within twenty minutes of getting back home…lighting is such a fucking shitty trigger to have.

It’s also one that’s denied constantly by professionals…and no, it doesn’t have to be flickering/flashing, bright lights or changes in lighting for me are just as bad as flashing lights. Like yeah okay, I’m a special case & this is uncommon, but you don’t know everything about the brain and you can’t claim to know everything that triggers seizures 🙄😑

It’s been nice staying indoors and having less seizures as a result though. I’d forgotten what it felt like!

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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!

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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.

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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 🎄