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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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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!