Blog: The real reason I’ve stopped writing for The Canary? Watch this video. by Steve Topple

Andy

Andy

Retired committee member
As some people know, I’ve stopped writing for The Canary, for now. One video sums up my reasons for this decision. But the backstory behind it really hammers home why I’ve done this. And it also acts as a testament to the situation for millions of chronically ill people around the world.

The tip of the iceberg
This is my girlfriend Nicola Jeffery having one of her regular seizures. Some people may find this upsetting:



These apparent tonic clonic episodes happen at least once a month. They leave Nic fatigued, with Post Exertional Malaise (PEM) and bed-bound for days afterwards. But they are merely symptoms of a complex web of underlying diseases and chronic illnesses she lives with. And they are also merely a symptom of why I have given up full time work.
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https://mrtopple.com/2019/03/07/the-real-reason-ive-stopped-writing-for-the-canary-watch-this-video/
 
Andy said:
https://mrtopple.com/2019/03/07/the-real-reason-ive-stopped-writing-for-the-canary-watch-this-video/
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I grok that face and I hate it so much, to know so many others are suffering so obviously. I guess you need to really experience it to believe it. That's a problem.

What pisses me off is that every damn physician who falls to it says the same thing and somehow that galactic-sized red flag is just brushed aside. That's the most giant, absurdly impossible coincidence in the damn universe, that so many people would conveniently have the same damn belief of an experience that is apparently all illusion.

Empathy is the underappreciated tool in the medical toolbox. Not everyone has it but those who do should be able to understand that this is a real experience. This is the kind of experience nobody who doesn't understand it can fake. It's criminal that it continues to happen despite this much awareness.
 
I have only looked at this blog and video briefly. The woman in the video looks to be having a grand mal epileptic fit. I am not sure how that ties in to the story in the blog, although apparently she has been diagnosed as having epilepsy.

I am not clear what message the video is intended to convey. Epilepsy is very unpleasant and fairly common. Impact on life is usually pretty complicated. I would like to try to understand more about how it is thought to relate to other things in this case.
 
she was breathing (out) with "round" lips.
and there was like sweat in her face.

looked familiar to me, this first part.
cold sweat and acidosis?

so, what happened @lansbergen ?
:)


if these ppl are users here, i would like to know if she heard him speaking, all the time.
 
lansbergen said:
Did You have a close look at what happened before the fit started?
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If she's been diagnosed with epilepsy (per JE's comment above) then the first bit pre-seizure could be an initial partial seizure (an 'aura').

My OH has temporal lobe epilepsy and virtually all the time she only gets the partial seizure / aura which doesn't develop into a full tonic-clonic; indeed, she's only ever had about 3-4 full tonic-clonic seizure in her life. In her case, the partial seizure presents as altered emotional state, 'freezing', some speech impediment and almost entirely favouring her left hand over her right (she's right-handed normally). Partial seizures can present very very differently depending on where in the brain they start.

Fun fact: my OH has also suffered at the hands of the BPS brigade - prior to having her first witnessed tonic-clonic seizure, her partial seizures were misdiagnosed (despite a strong family history of epilepsy) and she was sent for CBT for 'panic attacks'. Three years of ineffective counselling and believing her almost monthly 'attacks' were because she just couldn't control her anxiety. Funnily enough, being told to think your epilepsy better is not an effective treatment. Once she'd had a 'proper' epileptic seizure she was given an EEG, put on the correct anti-epilepsy meds and her 'panic attacks' magically disappeared.
 
Londinium said:
Three years of ineffective counselling and believing her almost monthly 'attacks' were because she just couldn't control her anxiety
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Something something Peter White saying to the NICE committee that if a treatment does not work after a few weeks then it's probably wrong or the diagnosis is wrong. Can't even follow their own advice, because their treatment is special, I guess. 3 years is absurd waste of time on a misdiagnosis. The whole point of this is supposed to save money and it doesn't even do that.

I tried therapy once. Ended up mostly talking about stuff of 0 importance to my life or my health problems because I had nothing else. Fortunately it was cheap through a university program but it was a complete waste of everything.
 
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