Dr update

Woke up from a nap to Lyle finishing up the phone appt with the GP.

Supposedly went very well, but after our initial ME appt last January, we’re all too aware appt vibes CANNOT be trusted, as #doctorsaredickheads 🙃

But Lyle was on the phone for over 20mins 😅

He went through my symptoms – seizures, orthostatic intolerance (inability to sit without losing consciousness, HR increasing by 80+bpm upon standing), chronic pain, migraines, PEM/PENE, how limited my life is, & he was able to say a private occupational therapist had evaluated me & prescribed a stairlift, wet room, & railing (still not sure we’re getting all 3, not heard from the grant people or our landlord).

Lyle said the dr seemed pretty horrified at how we’d been messed about & left to struggle alone so long, which is a good sign. She could see we’d been trying to find answers for my seizures since 2017, that I’d had an abnormal EEG reading, & that nothing had happened since. She said it wasn’t acceptable that I’d been left with no diagnosis in this condition. She’s talking with the head GP of the surgery to find out how we’d go about getting an ME diagnosis with no specialist, & we’re calling back mid next week.

I so, SO want this to actually be positive & a step in the right direction…

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The NHS & ME

Mostly copied from my instagram

(I’ve been writing this for an hour & I’m very tired, so I’m just gonna post and hope it makes sense 😂)

I’m always shocked by the NHS’ complete disregard for such a life-alerting (life destroying?) condition as myalgic encephalomyelitis. It’s truly vile.

ME is an often disabling & potentially life threatening condition that causes a vast array of symptoms, from seizures to being unable to eat unassisted. Many sufferers who have moderate-severe ME are housebound, bedbound, & unable to take part in the simplest of activities.

The NHS invested an extortionate amount of money into treatments that we now know are (at best) useless, & at worse immensely harmful to ME sufferers. These are graded exercise therapy (GET), CBT, & the PACE trial – pacing can be helpful, but the research was biased.

They also, somewhat incredibly, advise against resting when your symptoms are worse.

Rest is incredibly important to those with ME, along with listening to your body & not overdoing it!!

The NHS refuse to accept this though – after all, so much money was invested in GET 🙄

Secondly the NHS views ME with great stigma; patients are disregarded, bullied, abandoned, & viewed as having a mental health condition – ME is *not* a mental health condition.

Why are CAMHS treating ME?!

ME is a devastating multi-system disease, often referred to as a neurological condition – it can affect your MH (what disabling Condition wouldn’t?!) but is not a MH condition.

There’s no cure & many people have been reduced to a shell of their former selves due to crippling symptoms. It’s about time this abandoned community got the care we deserve…

#DoctorsAreDickheads

This is a hashtag currently trending on Twitter, & it’s a vitally important one.

I’m too fatigued to write out much about it, but here are some screenshots.

And here’s my story

And here’s some ridiculous individual who totally missed the.point of the movement:

And my response:

I find it so hard to believe how some people are missing the point of #DoctorsAreDickheads.

WE KNOW not all doctors are disgusting human beings, that’s not the point here. The point is this is a way for patients to be heard – this is a way to shine a light on the abuse & neglect that the vast majority of chronically ill/disabled people face from medical professionals.

We are fully aware there are good doctors out there, but that isn’t enough, that isn’t okay…we need to be heard, & there needs to be change!

And there ARE doctors out there who are listening & understanding the movement!

I’ve retweeted a few good threads if you’re on twitter, I’m (@)SendSpoons 🙂

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.