Janet Onalik 🍉 🌎 🍉

Nunavut. Tootoo to 7 grandkids & 1 GGD 🌎 Want to see a kinder, greener, more just world for them & the upcoming generations. ME/CFS ♿️

[Elizabeth @blind_kindness]

I have some follow-up scans this week and I’m desperately hoping for positive results. If anyone can send positivity or prayers my way I sure would appreciate them, L 🙏

[Janet Onalik 🍉 🌎 🍉 @Janet22onalik]

@losinghopein It’s so scary being disabled or too sick to work.
I’m sorry so many people have to live with this ongoing fear of losing their housing, not being able to afford prescription meds, losing service animals, not being able to buy healthy food!

[LosinghopeinCanada @losinghopein]

Ok I was able to log in to my cra and I'm getting the grocery benefit. It will help a small amount but after I pay one bill, what am I expected to do for the rest of the year? Forever?

Disability support is way too low, it's not even a dignified life. It's suffering. ☹ #CDB

[Janet Onalik 🍉 🌎 🍉 @Janet22onalik]

@chydorina Thank you for sharing your story. This is the hell of ME. Truly, the history of ME is mind boggling, even though one lives it oneself.

[🕸️Dr.T, PhD @chydorina]

I threw myself into psychotherapy and mind-body stuff like brain-retraining and meditation as soon as I was dx'd with 'Conversion Disorder' - by a Neurologist.

It seemed highly unlikely to me that what was going on was 'psychological' and not simply post-infectious (given that I had had Dengue and did field work in the Tropics) but I had had some recent trauma related to student gun violence and thought maybe it was a mind issue.

I was a tenured professor of Biology at the time - giving international invited talks and supervising dozens of students and teaching huge undergrad courses and small advanced graduate courses. I was publishing and getting grants and doing field work and working my ass off and loving it. Life was an adventure.

For 3 years after the diagnosis I Iived and breathed meditation and CBT and GET and brain re-training. I followed doctors suggestions and took anti-depressants and anti-anxiety meds and later even antipsychotics. I was going to recover. There was simply no other option I was willing to entertain and if the experts said this was the way - well.... of course I jumped on the bandwagon. Having conversion disorder was a much better option than an incurable untreatable invisible mystery disease.

Unfortunately, during this period I kept declining and finally I was bedridden and severe - unable to care for myself and had to move in with family and sell my house. I was in my mid 40s. It was not until I started treating my dysfunctional biochemistry, pathogens, mitochondrial dysfunction, and hypometabolism that I began to stabilize and my baseline began to increase. I wasted years on mind-body interventions - years that I could have spent focused on recovering from post-infectious dysfunction. I truly believe that if I had been given the right diagnosis to start I would not have declined to severe and lost my entire life.

Its so crazy - its like these bozos think we didnt try all this stuff. Many if not most of us have tried everything - from God to psychedelics and everything in between.

[Elizabeth @blind_kindness]

Just once I would like media to do a deep dive into disability supports instead of just regurgitating the verbage put forth by government. It is all smoke and mirrors. Here is just a little research I've done on one province and this is just scratching the surface.

"The changes are going to streamline benefits" aka Cut them.

Examples:

Prior to streamline, actual moving costs provided after 3 quotes given. After streamline, no quotes required and a single person can get only "up to" $300 for moving expenses.

Prior to streamline, actual vet costs reimbursed when reciepts are submitted. After streamline, $100 per month for service animal (vet costs are included in the $100)

Do you see the pattern? Streamline means less work for the workers and in turn less benefits for the clients. Streamlining, changing, adapting, remodeling, etc never benefits the clients. It is simple verbage that prepetuates a narrative that government is providing adequate supports through social programs to the provinces most vulnerable. They lie.

**To be clear, this is only one province. Some provinces are worse, some are a little better, but ALL PROVINCES have income supports that provide well below poverty income amounts and extremely lacking benefits.**

[Elizabeth @blind_kindness]

On behalf of myself and others I don't know how to say it any clearer. Persons with disabilities DO NOT receive enough benefits to cover the costs of basic needs. Rent, groceries, transportation, medications, or any emergencies that should arise. PLEASE reach out and make a difference. Give $5, $10 it all helps!

[🕸️Dr.T, PhD @chydorina]

The piece that @wired and all the authors of articles promoting brain re-training seem to leave out is how much we (patients) actually wanted "mind over matter" and brain-retraining to be effective.

Most of us have actually spent (wasted) years on brain re-training and similar interventions.

Would we rather have a glitch in our fight-fright response and be able to fix it with neurofeedback or would we rather have an incurable, untreatable, severe neuro-immune disorder that leaves us gaslight and medically abandoned?

The answer is obvious. The same thing goes for GET - graded exercise therapy. We all want/wanted treatment to be this easy, this achievable. Indeed, because most of us inadvertently practiced it for months or years early on in our illness before we learn how to pace we declined and lost function. Inadvertent informal GET is actually the reason most of us decline.

Brain-retraining, GET, meditation, therapy (CBT) - we wanted treatment to be this obvious - we wanted these to be effective.

In each of our n=1 intervention trials (and most of us have dozens if not 100s of substances and other interventions that have been pursued) - mind-body techniques/GET/CBT/neurofeedback/meditation/breath work - these are well represented. If I had to take a guess - upwards of 95% of us would have attempted at least a few of these modalities.

The reason we are so adamantly opposed to research funds going into these interventions is that we know they dont work and we also know they can make us worse and we also know that they delay us from actually pursuing interventions that could help and we also know that clawing ones way back from severe is hard to impossible. The best current way to manage these conditions is to stop declining - trying to stabilize. And that is a travesty. The response of the media here is beyond irresponsible and archaic. Welcome back to the dark ages of hysteria.

[Elizabeth🇨🇦😷🏳️‍🌈🏳️‍⚧️ 🧙🏻‍♀️BLM💜 @elizajody]

Can you help dear Hope with a few dollars? She is in a very stressful situation.

[Janet Onalik 🍉 🌎 🍉 @Janet22onalik]

https://t.co/DBlsQtDraK

[Janet Onalik 🍉 🌎 🍉 @Janet22onalik]

@Terrilltf Oh. This is exhausting

[LosinghopeinCanada @losinghopein]

I have a bill under $200 due by tomorrow, 2 appointments on the 1st and 2nd, groceries and now I need some help dealing with my moms illness and eviction with extra transportation costs, etc.

If you can help me, I'd really appreciate it 🙏

[email protected]

[Jack | amatica health @JackHadfield14]

People don’t realise how much you can lose and still have to live every hour.

I’ve lost walking, my brain, normal vision, friends, food, music, love, career, hobbies, sunlight, sleep…

I can’t even grieve it without getting sicker.

Disease takes more than you realise you had.

[Katy B @KatyBruce108]

There's a power imbalance which isn't being acknowledged, we currently have seriously ill #pwME in
@NHSuk hospital who're being denied life saving healthcare because of a deliberate misinformation campaign targeting #ME
All Drs have a responsibility to educate themselves about ME

[LosinghopeinCanada @losinghopein]

"Even the indexed ODSP rates remain nearly $1,000 below the official poverty line per month."

How are disabled people like me supposed to make up this huge gap in funding if I'm too sick to work? That is a lot of money to be short every month 💔

#CDB #Disability #Help 😔😭🇨🇦

[Mitchell Tremblay @ODSPoor]

@veganlovebunny or Erin was an outspoken advocate for her own life right up until taking it herself while facing eviction, targeted online harassment, and worsening physical and mental health.

Her passing was the direct result of underfunding, vilification and ignorance on the behalf of #Ottawa, #Ontario and #Canada. She begged for help and no one came, and when she passed her elderly cat was automatically put down and an entire household was gone.

This isn't unique, there are thousands of stories like hers and it could be your story soon too, anyone can be disabled, anyone can be cornered but everyone deserves compassion.

Where is your compassion #Canada?

@liberal_party @MarkJCarney @_MarkSutcliffe @NDP @theJagmeetSingh @CanadianGreens @ElizabethMay @j_pedneault

https://t.co/2ysVELMJ4t

[LosinghopeinCanada @losinghopein]

Our government will spend well over a billion dollars to host a few FIFA games but ignore poverty, homelessness and all the folks going to the foodbank. Really gross.

Pulling disabled people out of legislated poverty was never going to happen #CDB 😒

[Chantal Mancini, PhD @uniongrrl]

When our mom needed home care, it was PSWs who provided it. But staffing shortages meant we had to call mom twice a day to ensure someone showed up. If not—we had to provide that care, or she didn’t eat or get bathed. These are the real-life consequences of undervaluing PSWs.

[Scott Robertson @sarobertson_]

David Eby: "This country cannot work if separatists, separatist premiers, others get all of the attention of the federal government. And those provinces where we're standing squarely behind Canada, where we're fighting for Canada -- we're left out of the discussion."

[Janet Onalik 🍉 🌎 🍉 @Janet22onalik]

@blind_kindness Sending love for the tough week ahead, Elizabeth! ❤️