I AM MADELINE

mini episode where I give you a few little snippets of some good things among all of the ongoing Herculean rough and tough things

documenting yet another instance of when I go out of my way to double check on the some sort of medical provider and get told interact information which ultimately causes me to hemorrhage energy

where I'm thinking I'm going to have to do different strategy in really start getting a public officials to understand that if they are thinking that stonewalling me and waiting for me to die will make the problem go away. that it isn't just horrifying it isn't true. absolutely things will go terribly for them if I die. at some point somebody's going to cudgel them with my story. And truthfully if they allow that, it's as well they should. But it's a million times better to work with me, to use my experience and my ability to see all of the different sides and communicate them to course correct a huge loss of talent and tax base to unnecessary disability via long covid and all kinds of other long viral ME just being diagnosed in a timely way with correct instructions to stay inside one's energy envelope can be dramatic. And that's just aiming at the financial impact politically not the human rights atrocity of the kind of abdication I'm experiencing anyway, I'm hanging in. Just barely. by my fingernails Sick times republish of op-ed March 20th 2025 https://l.gourl.es/l/56898fa8ccf060b8bf79b817ad9fabd986f4a62f?u=11010884 gfm https://gofund.me/6d981312 My email if you think that you're somebody who could do the kind of textual help I need iammadelinepod@gmail.com The CTV email campaignEmail campaign Template https://docs.google.com/document/d/1VD2zqOKxcQp7SUP06mY8slZlH1sXkKHKVPV0IfLo-uI/edit?usp=sharing

where I talk about the push me pull you of my mitochondria requiring rest and any hope of survival by getting governmental change or enough GoFundMe to stay alive being about me doing advocacy and on top of all of that the day-to-day living things of housekeeping and going to treatments. It's all more energy I have and yet it all needs to be done. And trying to navigate the competing needs of these things is like a terrible tightrope Links I talked about in the episode Sick times republish of op-ed March 20th 2025 https://l.gourl.es/l/56898fa8ccf060b8bf79b817ad9fabd986f4a62f?u=11010884 GoFundMe https://gofund.me/6d981312 Email campaign CTV Template https://docs.google.com/document/d/1VD2zqOKxcQp7SUP06mY8slZlH1sXkKHKVPV0IfLo-uI/edit?usp=sharing Full info in gfm update https://gofund.me/6d981312 Housekeeping GoFundMe https://gofund.me/73aeb36e5 Petition Open for a second round of signatures https://bit.ly/Marcia_petition TheAtlantic article just came out that includes me(It was a gift link and now that seems to have expired but hopefully you can find a way to see it) https://www.theatlantic.com/magazine/archive/2025/09/canada-euthanasia-demand-maid-policy/683562/?gift=yKNFI6bZtyj8clr3yQtLYCSwFBjNIwPzg10Axz0GrTA&utm_source=copy-link&utm_medium=social&utm_campaign=share by @elainaplott I'm so grateful that they linked to my podcast. For Atlantic readers As it doesn't talk very much about the specifics of my situation or my disease I made a little primer for them https://open.spotify.com/show/0oNLwzI1qZvvZ51bau1aNi

it's Easter morning, and I talk about some of the good things that have happened but also as per usual document the obstacles that are ever present I talk about this housekeeping GoFundMe a friend set up https://gofund.me/73aeb36e5 and the CTV campaign https://docs.google.com/document/d/1VD2zqOKxcQp7SUP06mY8slZlH1sXkKHKVPV0IfLo-uI/edit?usp=sharing

I was trying to figure out what to call this and I think that David Bowie Queen song under pressure pretty much describes it I think. So I'm continuing to try to document the insanity of the measure of difficulty I'm attempting to navigate I took a picture of the microwave rust of the inside. I figured you might want to see how insane it was

A quick update as the sick times have republished my op-ed. I'm a bit addle brained so you're not getting a lot much in the way of intelligence but it does document some of the brain fog issues Sick times republish of op-ed March 20th 2025 https://l.gourl.es/l/56898fa8ccf060b8bf79b817ad9fabd986f4a62f?u=11010884 Linked by Twitter post https://x.com/i/status/2035058600604004423 And once again Email campaign CTV Template https://docs.google.com/document/d/1VD2zqOKxcQp7SUP06mY8slZlH1sXkKHKVPV0IfLo-uI/edit?usp=sharing Full info in gfm update https://gofund.me/6d981312

today I don't just document the grinding difficulty but my memory banks pulled up some really nice light and darkness times from when I was little and I also talk about some really nice things from some people now as well. focusing on the reality and all of its shades light and dark is definitely a critical part of how I've been surviving once again here is the legacy News campaign document if you want to participate I was told that if 12 people write to a news source to ask for the same story that it will happen🤞 Template https://docs.google.com/document/d/1VD2zqOKxcQp7SUP06mY8slZlH1sXkKHKVPV0IfLo-uI/edit?usp=sharing Full info in gfm update https://gofund.me/6d981312 #myalgicE #disability #canpoli #longcovid

where I talk about how I feel about My power and the leadership roles I have been in and the leadership roles I may be in in the near future depending on how the email campaign goes speaking of which I was told that if 12 people write to a news source to ask for the same story that it will happen🤞 Template https://docs.google.com/document/d/1VD2zqOKxcQp7SUP06mY8slZlH1sXkKHKVPV0IfLo-uI/edit?usp=sharing Full info in gfm update https://gofund.me/6d981312 #myalgicE #disability #canpoli #longcovid #power

where I talk about how rest day is rarely just the rest day because all the stuff I've been compartmentalizing comes out and wants to be processed. which is not very restful. having my body not moving is only one kind of the rest that I need again here's the email campaign Because I was told that if 12 people write to a news source to ask for the same story that it will happen🤞 Template https://docs.google.com/document/d/1VD2zqOKxcQp7SUP06mY8slZlH1sXkKHKVPV0IfLo-uI/edit?usp=sharing Full info in gfm update https://gofund.me/6d981312 #myalgicE #disability #canpoli #longcovid #idesofMarch

It's pi day. unfortunately I don't have any actual pie to celebrate with. But I hope you're having some nerdy fun. For me it's whimsy as I'm still experiencing squish squash. Still documenting what it feels like to be dealing with so much and then have more land on my plate yesterday. I don't know how else to push back on the bias that thinks PWD on assistance are just sitting around eating bonbons and watching TV. blArgh So You can participate in the email campaign here's template for you https://docs.google.com/document/d/1VD2zqOKxcQp7SUP06mY8slZlH1sXkKHKVPV0IfLo-uI/edit?usp=sharing as well (Link and more information in GoFundMe update https://gofund.me/6d981312 ) Why the campaign? because I was told that if a dozen or more people write in to ask for the same story that It is much more likely to happen. #myalgicE #disability #canpoli #longcovid #piday

things that got even worse today. So much so that I called a friend, had a meltdown, which I talk about in the episode, and decided that I am the universe's chew toy. yeah, a little dramatic for sure. But just when I think things can't get even harder something else happens. What on earth is the Great whatsit up to? then I put my big girl underpants on and sent out the email campaign because who knows, that could completely change things. So You can participate in the email campaign, here's template for you. details it in the episode https://docs.google.com/document/d/1VD2zqOKxcQp7SUP06mY8slZlH1sXkKHKVPV0IfLo-uI/edit?usp=sharing as well (Link and more information in GoFundMe update https://gofund.me/6d981312 ) Why the campaign? because I was told that if a dozen or more people write in to a large legacy news organization to ask for the same story that It is much more likely to happen. #myalgicE #disability #canpoli #longcovid #fridaythe13 I choose to believe is good luck

In which I talk about how I only started to feel better when I realized how my pink hoping strategies were interfering with me understanding that being on the mobility scooter today or trying to get into the hyperbaric chamber we're paying impossibilities that were just going to make me worse. The kind of long-term pain especially the fibromyalgia colliding with the dyslexia and the architectural pain which creates a special kind of hell. And add to that the new motor on my scooter creating a high-pitched war which collides with the sound sensitivity portion of ME and fibro. And on top of that because of forces outside of his control haven't been able to see my physio for almost 6 weeks. And I haven't had this extent of pain nausea and pain nightmares since the COVID lockdown. now that of course got way worse because it was months. But even being three to four weeks late for physio means i have quite the cacophony of pain, amplified exhaustion, and loss of emotional resiliency

at 6:00 a.m. or so and I've been awake since 2:00. I promised myself I would document all of the stuff particularly how hard things are. This is me without the coping strategies of the previous episode. cuz pain dreams strip all that away resiliency dampened by pain and the extent of the difficulties means that despair has caught up with me

we're a talk about the many different kinds of difficult things I'm attempting to deal with, advocacy next steps, advocacy current obstacles, and health supports obstacles. hence the title squish squashed and the episode icon is spring blossoms! cuz I adore spring. So that helps with my head space a bit. But I'm also worried about despair. currently going to run out of GoFundMe money the beginning of April. which is terrifying. it never gets less terrifying the whole month to month GoFundMe thing

It's Valentine's Day(you'll see I'm wearing red Because I'm a big believer and celebrating whenever possible. It does a brain good!), but unfortunately disability bias issues do not take a holiday nor does the Herculean effort of staying alive. But I'm working to do that are arm floaties not the least of which is wearing red

petition presentation live stream link https://www.youtube.com/live/PN6-ewFs-00?si=UBsftv5p3FLnMc7m although the petition has been presented we are leaving the document and its additional resources up in case anybody wants to use it as a template and also for a reference. I know everything I'm proposing saves the system massive amounts of money and problem solves disability and long viral disease deficits https://bit.ly/Marcia_petition https://www.thecanary.co/opinion/2025/12/19/me-void/ Also so you have it because it's my lived experience, here's my recent op-ed

Petition presentation is Wednesday the 21st 11:00 to 11:30 a.m. Pacific standard Time. The zoom room will be open from 10:45 to 11:45. I do explain how that will work in this episode as well as what it feels like in this lead up to the in-person presentation of the petition that I've been working to get signatures on for a year. BTW we are still accepting signatures until late Tuesday night. We are currently at 1358 signatures and would very much like to get up to 1500 or higher before we present Here is the zoom virtual attendance of the petition next Wed Jan 21st and the petition https://bit.ly/Marcia_petition & my Dec op-ed https://www.thecanary.co/opinion/2025/12/19/me-void/ Here is the CTV article I mention about the United Nations https://www.ctvnews.ca/health/article/united-nations-report-says-canada-should-repeal-maid-for-people-with-non-terminal-illness/ Here are social media links to the infographic that I posted Facebook https://www.facebook.com/share/p/14QVw39pnTT/ X https://x.com/i/status/2012247140635165111 Blue sky https://bsky.app/profile/madelinenerd.bsky.social/post/3mcktzafcas2w Instagram https://www.instagram.com/p/DTlPzmdAeaX/?igsh=Nzkzd3V1ZHZkNW0w Tumblr https://www.tumblr.com/iammadelinepod/805925264282550272/join-our-cloud-hd-video-meeting?source=share YouTube https://youtube.com/shorts/Bf1ZAWrSyN4?si=dH73WvXaGAtk74x3 #MyalgicEncephalomyelitis #myalgicE #disability #chronicillness #chronicpain

episode done at a hospital treatment. kind of a recording in the wild lol Links I mentioned Petition https://bit.ly/Marcia_petition Canary opted December 19th 2025 https://www.thecanary.co/opinion/2025/12/19/me-void/ Audit of UK Hospital Doctors’ Knowledge and Experience of Myalgic Encephalomyelitis https://www.mdpi.com/1648-9144/57/9/885

photo is of first blossoms that I saw yesterday! That usually lifts my spirits Because I love spring. But it's the wee hours in the morning where pensive and melancholy seem to be emotions that I'm experiencing. So in this episode I've had to puzzle out why I am feeling this way. I think it's partly because all that's ahead of me right now is fighting without anything to look forward to Because I don't know how far the current GoFundMe money gets me into January. And it's unfortunate that that impeded my ability to enjoy my friends this evening. But hand to mouth like this tends to even blot out the good things sometimes. And that's frustrating and it seems to be amplifying my melancholy. often focusing on things like an upcoming MP constituency appointment can lift me with that purpose. But that's not working right now. ultimately I think I just feel alone even when with people because of what's happening to me I talk about the op-ed https://www.thecanary.co/opinion/2025/12/19/me-void/ and Petition https://bit.ly/Marcia_petition