Thread by @hummbugpie

#URGENT Twitter, I need your help-my health is critical I travel abroad to recieve trx in 4 weeks as a #pwME- An anonymous donor has covered the cost of my #HelpApheresis trx🙏🏽🦋 We are Rapidly trying to raise costs co-trx, accommodation, ✈ & care costs. gofundme.com/f/help-Trish-a…

I am severely disabled. I have been since the onset of my illness. I suffered rapid deterioration and I'm now suffering widespread structural degeneration after being gaslit heavily for the past 8yrs. This is a chance to Save My Life. My health has been critical all year.

I have been in and out of A&E all year referred there by my specialists doctors and the ambulance services for emergency plasmapheresis treatment and they keep sending me home because I'm immunocompromised I wouldn't be immunocompromised if they actually treated me.

I am now end stage because I have never been able to access trx here. Despite this with the right trx, I do stand a chance of reversing the destruction that has happened to me. I am under the care of a neurosurgeon who has requested further imaging but this is all time sensitive

After fighting for my life like an animal or year and advocating for myself harder than I ever have it is incredibly demoralising to be crowd funding at the end of my life to access effective treatments and to finish my diagnostics. But I I'm desperate to survive this

I have not been manually firing up my own chewing swallowing and breathing muscles daily since 2015 to go out like this.

If there is hope the meeting there is hope for all of us and I truly believe this so please please hope with me dream with me, fight for me & stand beside me

I do not want to go to any more of this alone, I will share every step of my journey once I start treatment. I'm trying to collate my story my journey so I can go to the press if I need to two if I can't raise the funds through the crowdfunder but my story is so traumatizing

It isn't anything that I can Rush. I have been rapidly grieving for yrs to be able to share it.. I will launch my platforms at the end of this month. Sharing how I've been keeping my body firing all this time, how I managed to train my carer & soft tissue team up

To help me manage the end-stage nerve damage & structural degeneration. They have been helping me regain some of my nerve function and maintain the function I have. My hands are degenerating so I cannot keep this up myself.
I will be sharing my journey to accessing effective trx

Please support if you are able, every dose of LOVE will help. The co treatments are on average £300 per week and it's a minimum of 8 weeks treatment. I have secured accessible accommodation and found a Cypriot care agency to replace my current care team.

I will be leaving the country on emergency travel documents as passport appointments haven't been available since I was offered this opportunity, this has all been an incredibly overwhelming and fast paced time. I never expected to be well enough to leave the country again

And I certainly never expected it to be under these circumstances.

I am so grateful to be granted this opportunity but I need support to get there.

The weeks have been flying by.. I am nervous, so scared about being out there on my own. I can't self propel.. 👩🏽‍🦽💔

My mum can't get annual leave & my sister is on jury duty.

So il be travelling by assisted travel and met at the airport by the care agency to go to accommodation & establish all care needs, clinic schedule & adaptations for showering (seated) commuting (lying down) etc.

I am incredibly vulnerable.. but in full surrender going into this.

And I am so grateful that at the end of my life complete strangers are gifting me some chance of respite finally.

I have not even been managed for my pain. My Bones have been breaking under me.. my nerves 😭

And all the while my neurologist told my family that this was all in my head, he dismissed my referrals for diagnostics. He diagnosed FND 🤚🏾🧿

I have not been able to access basic health care or emergency care since until I went private to highlight all that was missed

I do not stand a chance of seeking Justice until I have been able to access an effective trx to prove that had I accessed trx sooner- then all of my suffering could have been avoidable. Even if it is too late for me now, it will still prove that my death was avoidable.

And plasmapheresis has been an approved treatment for my diagnosis of IgG paraproteinemia that was confirmed in 2014... they never gave it to me because they couldn't justify doing so without finding the primary cause of my infection. So I have been monitored as I deteriorated..

As a case study- instead of actually offering me the treatment that they knew I needed- it's a lot more complex than this haematology and immunology and infectious disease all fought for paraprotinemic polyneuropathy to be diagnosed so they could offer me plasmapheresis but neuro

Continued to cancel my referrals for a second opinion and kept referring me onto psychiatry instead.

Psychs have been clearing me all the way through this referring me back for investigation and diagnosis of my organic pathologies refusing to take me under their care

Despite my high risk of dissociating due to the sheer overwhelm of the symptoms that I live with and have had to manage all of this time, alone. (Constantly managing dislocations under the siezing, trying to keep my neck stable, keep myself breathing..moving food through me...)

They explained because I survived my childhood trauma without dissociating that is what has given me the capacity to withstand traumatic situations&not dissociate as an adult but if my situation became anymore overwhelming then I was at risk of dissociating and never coming back

As in I will just check out one day & I won't be able to come back so they have been desperate to help me work through my trauma and help me manage some of the social personal and health aspects of this but they refused to take me on as a patient without neurology ruling out all

Organic illnesses first. They said they have seen enough cases of patients with complex neurological conditions who have been misdiagnosed and referred on to psychiatry and the psych medications have been fatal for them - that's what my psychiatrists told me 😭

So no I am not anti psych, I'm not anti-science. I am pro-life I am pro-choice I am pro equality. I have stood against child exploitation globally my whole life, I have advocated my whole life- I was the UK's top female fundraiser, I lost the capacity to SPEAK for Years.

I am still healing so much of the damage to my neurocircuitry from all of the medication that was trialled caused serious adverse side-effects, it's why I am unmanaged for all of it today.

So yeah that was in 2018 I was in a relationship then I still had some security

Within a few months of psychiatry discharging me& referring me back to neuro, my relationship broke down&I became homeless in my severely disabled state. I have clawed my way back through the help of adapted housing, finally approved benefits& granted access to care provisions..

I want to show people that it is possible that it is ok to come back from absolute Rock Bottom with no one beside you, I didn't have anyone for the longest time and I was stuck in the most toxic relationship, it nearly killed me. He beat an abandoned me when I deteriorated

He couldn't accept that I wouldn't get better and we had a thought for 6 years to get some answers just to be treated the way that I had ad&d didn't know what to believe anymore nobody did and he could not watch me deteriorate anymore. That man was my sole carer and I loved him

And no. I have never taken action against him, nor forgiven him. I have had too much to prioritise- no one will ever know what we had to survive it was soul destroying, for both of us. I blame the system that gaslights patients and their families - it teaches Society 2 disregard

Anyone with vulnerabilities and disabilities.

I blame the constant austerity & adversity that we had to face despite him working multiple jobs, 60plus hrs p/wk, whilst training as a welder & trying to care for me full-time.

I was 24 when I got sick.. he was there from the start

I've been learning to stand in the world on my own like this for the past 3 years. I have been prioritising healing all of the hurt for the lack of understanding when I needed it most, healing so I could open my heart up to trust that I am loved and supported

I couldn't be here now without my family, I'm so grateful to each of you- thank you so much for working so hard to heal everything that we had to heal so we could all be in each other's lives now, I'm so grateful to have you here, fighting for me and with me.

Medical training on the updated NICE guidelines for ME cannot come soon enough. When I think of all the things that I have been through since I was 24 and the place that I am now at 33 - of course I am worried about every other person navigating all of this now #LongCovid

I have fought like hell to regain the capacity to spk, for 6 yrs I couldn't even manage simple budgeting, I still can't write nor will I likely ever be able to again thanks to the degeneration in my hands I now speech type. Overwhelm is an understatement.. gofundme.com/f/help-Trish-a…

@MMissingHolland @MillionMissCan @MillionsMissin2 @MMissingAus @MMissingSweden @MillionsMissgFr @MEActNet @MEActNetUK @meactionscot
Please help me circulate my sister's crowdfunding efforts to raise my accommodation flights & co-treatments costs for #HelpApheresis in 4wks🙏🏽

I have been trying to raise awareness but most patient advocacy groups do not allow for personal crowdfunding efforts. We have a chance to Save My Life-the apheresis will gift me time to get through neurosurgery a1.5yr waiting list. Without it I won't make it past a few months

I will die waiting on my feeding tube, nutritional support & powered wheelchair here.. there is no urgency and there are years worth of waits in all Healthcare now. THIS is an absolute miracle, please help me access it my circulating my post. Using my phone causes severe symptoms

Over using my hands siezes my neck and is causing incontinence and end stage symptoms. I'm trusting the community to help me advocate here - I cannot manage it all myself I am trying to use the function that I have to collate my advocacy videos sharing how I have gotten this far

Thank you so much for your love, support and SOLIDARITY 💙 You can find out a little more about my story and support my journey through accessing effective treatments here 🙏🏽🌈🎊🤍🕊✨

Please feel free to circulate the crowdfunder with your own message🙏🏽

gofundme.com/f/help-Trish-a…

#MedTwitter #HealthEquality #StopTheHarm #ApproveTheTreatments #HELPApheresis4LCandPVFS
#FundTheResearch #MEcfs
#MonochlonalGammapothies
#MGUS #CIDP #PostInfectiousOnset
#DemyelinatingNeuropathy #IgGIgAIgM #Pathologies #LongCovid #EBVIgG #IgGMEcfsBiomarker #plasmapheresis #LetsGO

@ynwal Thank you for sharing xoxo