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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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Neurology soon!

Less than 2 weeks to my appt!

Today we went into town (out the house 4hrs, two 10 minute train journeys) and I’m approaching 30 seizures total for today. BUT we had a mainly nice time out 😊

Wearing my welders goggles I was able to go in a bank with ZERO seizures for the first time since I started having them, and none of the Christmas displays (which I love) were problematic because of their flashing lights. Last time I had to close my eyes when walking by them!

Apart from an absolutely disgusting teenager who made the comment “haha they have seizures, let’s get a strobe out!!” 🙄 it was a good trip!

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OMG, I have an appt!!!

4 days ago we had the telephone appt with my GP.

It lasted less than 4 minutes & basically consisted of her being confused and asking my partner if “things had got worse” (she couldn’t understand why I’d been sent to A&E or why she’d been told I needed an expedited neurology appt. When she saw me in person a few months back she said I couldn’t be having seizures as I wasn’t ‘dropping to the floor’, and during a video of me having a seizure that we showed her she said “Well what am I supposed to be looking at here? It just looks like you’re watching television” 😑)

Anyway, because we’d provided evidence from the hospital that they wanted her to try speed up my appt, she said she’d phone the hospital and try.

Lo and behold, today I got a letter through the door and early next month I have an appt with a neurologist 😃

I actually can’t believe it!! I’m so nervous about it though haha.

Does anybody have any advice for phoning the hospital to ask if they can provide a room with dimmer lighting for me…? If I have to sit in a room with fluorescent lighting I’ll end up having back to back seizures, and be unable to talk, think, feel sick, confused etc…any advice appreciated!

My happy face 😉

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Too much, too much!!

We’ve had a few busy days recently, beginning with my parents visiting at the weekend and journeying to a zoo.

The busyness caught up with me, and for the last few days I’ve just felt so physically exhausted. One day I didn’t leave bed other than to go to the loo. I have been SO TIRED.

For years I would’ve fought against this, called myself lazy, and been filled with self-hatred. But I’ve learned that when you’re chronically ill / disabled, you HAVE to listen to your body. Self care is not selfish! If you need a day of rest, you need a day of rest. If you need an entire day in bed recovering, do it!!

Today I woke up feeling energised, but I pushed myself too much. I ended up having to come home from a day out early, I had a seizure and fell (and have a cracking bruise on my head now), and we had to cancel plans with family. I rushed back into activity too soon, but I’ll learn from this and take it slower next time.

Point of this post? I dunno. Listen to your body, fight the stigma of others thinking you’re lazy, and do what YOU need to do.

ouch

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Nervous – my first BIG day in years!

Today my parents are up for a visit to belatedly celebrate my dad’s birthday, and we have a big day out planned.

We’re going to a zoo. Not just our teeny-but-lovely local zoo that’s a 15 minute drive away, but a BIG zoo a 50 minute drive away. That’s a huge journey for me (travel being my biggest trigger) and the zoo will most likely be packed with visitors, as it’s free admission until the end of this month.

After that, we’re hoping I’ll be well enough to look around a few shops and handle a meal out at a pub.

This is the sort of day out I haven’t been able to do in years, and so obviously I am nervous. I’m also aware that MANY people will stare at the zoo, due to my goggles. But I need them, so fuck ’em 😉

With my wide-brimmed hat and my polarized goggles, I’m hoping we can enjoy a really good day out with not too many seizures. Nervous but excited!