Ugh, life

Tomorrow is Lyle’s actual birthday & I couldn’t be happier we celebrated (repeatedly) earlier, as I am just not in a good place.

I’m hypomanic, & I’m so frustrated with being stuck in bed all the time. I woke up from a big nap today thinking it was morning, & my brain immediately jumped to “I’M LEAVING THE HOUSE TODAY!!” 🙄

Like, no. You can’t, shut up!

Yesterday despite it being a rest day I crashed so bad in the evening, & couldn’t open/control my eyes properly, move, or speak – for several hours I was too exhausted to do anything. I absolutely hate ME, but hypomania in addition is literally the worst…I’ve done really well this month, I’ve only left the house five times, & I don’t want hypomania to ruin that & cause a potentially permanent relapse 😭

Tomorrow Lyle’s going out for a meal with some of his family, & I’m staying home…I’m so jealous 🙄 Hopefully I’ll just be able to sleep.

I feel like soon, life will improve so much – thanks to the OT & grant scheme we’re getting a stairlift (30th of this month), wet room, hand rail, & with savings we recently bought a power pack for my ♿. I’ll almost definitely be able to do more overall with these adaptations to the house, especially as one of the smallest activities that triggers the most fallout is climbing the stairs 2x a day.

However that doesn’t really help when I’m currently irritated af, just want to GET OUT, but my body is incredibly physically exhausted… 😕

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Recent NHS fuck ups

  • On the 26th November we received a letter in the post saying I had an appt for an EEG *the next day*.

Great job guys 😑

There were also some huge issues with this appt ~ firstly, it gave me less than 24hrs notice, which is beyond ridiculous. According to the letter it was ready to be sent out in October!!! By the time I woke up & Lyle got the post, the phone line at the hospital was already shut.

2) I have never been told I would be having a sleep deprived EEG. It was agreed a sleep deprived EEG would be extremely dangerous for me, as missing sleep is one of the biggest triggers for my bipolar mania.

I was SUPPOSED to be having a 24hr EEG, which I found out about last June via letter. I haven’t heard anything since.

3) ME means I have to sleep/rest when I need to. I NEED to listen to my body, it’s taken me long enough to learn this!! Skipping sleep would make me immensely ill.

4) This hospital is supposed to have it on record that I can’t attend appts before 12pm…yet every appt they dole out seems to be between 9-10.30am 😑

Lyle phoned and left a message on the number provided. He cancelled the appt, explaining the letter only arrived today. He went on to explain that I was supposed to have a 24hr ambulatory EEG, not a sleep deprived EEG, as my health conditions mean that would be dangerous.

  • On the 29th November we received the exact same letter inviting me for a sleep deprived EEG, only the appt date was different.

They clearly either hadn’t bothered listening to our message, or had just entirely ignored what we’d said.

Lyle phoned up, left a bigger message, & asked someone to call back. Nobody did.

  • After having an amazing experience with PALS, we actually had a way forward to deal with appts. Due to a butt load of medical trauma & my autism, I struggle immensely with appts, & haven’t been able to attend any since summer.

PALS sorted it where I’d have several notes added to the system (these covered the fact I’m trans, explained it’s highly suspected I’m autistic & to bear this in mind, & to communicate with Lyle wherever possible), & advised Lyle to make a phone appt with my GP to sort out a verbal agreement of how the dr should behave.

This would cover not misgendering me, communicating via Lyle, giving me time to answer questions, and not blaming/mentioning mental health at appts for physical conditions.

Lyle booked a telephone appt; the soonest he could get was 2 weeks away.

I was stressing hugely on the lead up. I wrote a ton of notes, missed sleep, my depression got significantly worse, & we had several repetitive conversations about what Lyle would say, how he’d respond if the GP said this etc etc etc.

The day finally came, last Friday, & I was so excited to get it over with…

The GP didn’t ring 😑

  • Just prior to this, before we knew the phone appt was a bust, Lyle phoned up to book a physical appt for after the verbal contract was set up. The soonest appt we could get was a month away! 🙄

Even when I’m doing -100% of the appts I should ideally be doing for all my conditions, they still manage to constantly fuck everything up… 🙄

World Mental Health Day 2018

It’s #worldmentalhealthday 🎉

I’m diagnosed with major depressive disorder, generalised anxiety disorder, bipolar w/ psychosis, dissociative disorder & BPD. I literally have no idea how it is to be stable, to be neurotypical.

There is SO MUCH stigma surrounding mental illness, & in the UK at least it feels like we’re actually going backwards in terms of understanding & support for people who are mentally ill.

There’s finally a push for more common conditions such as depression & anxiety to be talked about, accepted & better understood – which is fantastic! But unfortunately other conditions are still heavily stigmatized, in particular BPD & psychosis. Individuals are viewed as scary, violent, selfish, manipulative…

In the UK, BPD(/EUPD) as a diagnosis is pretty much a death sentence in terms of treatment. It’s also VERY difficult if you’re wrongly diagnosed to then drop the BPD diagnosis, in order to be accurately diagnosed with something else. Even if you’re one of the lucky few who IS able to get reassessed & re-diagnosed, you’ll find its still brought up often, or you’re treated differently because BPD is mentioned on your file.

The way MH is perceived/treated in the NHS in general needs a massive overhaul. Support is hugely lacking, doctors are uninformed and uncaring…& people are dying because of it.

I know from my experience I’ve had numerous traumatic appointments, & my fair share of abusive doctors.

I’ve been told in regards to having hallucinations that I must be taking recreational drugs. I was 19, & already terrified. I was belittled, treated like dirt, left with zero trust for doctors. Tbh not much has changed since then haha! But after that experience I didn’t try get help in regards to my MH for months.

Even recently – my last suicide attempt was 6 months ago; two days before the attempt I’d been to my GP begging for help. Only she didn’t listen. She didn’t take me seriously; she offered no support, treatments or solutions, simply telling me to ‘come back if it got worse’. The message I received from that was “I’m not taking you seriously, I won’t do anything even though you’ve told me you’re actively suicidal. You have nowhere else to turn.”

There needs to be much more awareness & understanding, ESPECIALLY from medical professionals. These are people we turn to in desperation, & it’s all too common for them to turn us away or make us feel worse.

It’s all well & good for MH charities to produce campaigns telling us it’s okay to talk about how we’re feeling, that we should go to doctors if we need help or A&E when we’re suicidal…but it means NOTHING if when we go to A&E we’re belittled, laughed at, & bullied.

The stigma surrounding MH needs to be eradicated, & it’s the medical professionals who need to be targeted first & foremost.