Sorry this is so long. If it doesn’t interest you, I completely understand. Please ignore.
Hi all. Two days ago, I discovered I was a topic of discussion on another site. What was said was pretty brutal - that everything I’ve ever said about myself on MN has been a lie, that my writing is shit (possibly true), my photographs are shit (that’s a fair one), that I use the word “sigh” too much (also completely fair), that I’m overly verbose and unintelligible (this is probably true, too), and that I reference my dying all the time (completely fair and true).
The things that are true hurt, but I probably needed to hear them. Doing something that a lot of people hate me for is a stupid way to spend the time I have left. And I don’t want to be remembered as an overly dramatic writer and shit photographer, though unfortunately, I’m sure I’ve shown myself to be both. I will never be able to convince everyone on the internet that I’m not lying, but since there’s literally no point in not being honest with not that much time left, I figured I might as well try to fix this.
So, before I go (it’s definitely not a flounce because I believe MN has the ability to help a lot of people, especially women who are trapped, and mostly I don’t want to leave having made it a worse place) here are honest answers to several questions you might have:
Who are you?
I’m Toria. I live in Switzerland. I have a C permit (permanent resident) so I will be able to stay here until I die. I was worried about being outed because my bosses didn’t know yet that my serious illness had become terminal. They have now been informed of my health, since it’s worsening, I’m working in a contingency plan, so there’s nothing more to hide. My family are all dead (raised by my grandparents, no siblings - my biological mother does text but it’s awkward and we haven’t spoken in a decade, my biological father is dead), and I have maybe five really good friends in America, one in Monaco, and one in Scotland. I started as 5YearsLeft in December 2021 when my doctors (rheumatologist and neurologist) both agreed it was unlikely I’d survive another five years and they had no other ideas. By math, we’d be down to three years. By health… I doubt we have two years. I’m too weak to handle this much pain without seriously considered euthanasia.
What are you ACTUALLY sick with?
I said this was outing before because my doctors say it is. I have full-body myasthenia gravis and Behçet’s disease - neither of them are usually fatal anymore, but no one has them together. I usually just said vasculitis as Behcet’s is a form of vasculitis (your body attacks your veins). Neither of these are assumptions - they have been confirmed by either blood tests, biopsies, and in the case of myasthenia, also electromyography. There are only four reported cases that my medical team has been able to find - three of them are dead, and one was treated with a huge dose of steroids which they already tried on me and made things so much worse, by giving me Cushing’s syndrome and adrenal failure. ONE REQUEST: If you know ANYONE who has both of these diseases, full-body myasthenia gravis and full-body Behçet’s disease (both have just ocular versions) please, please send me a PM. My conditions are both refractory (no treatment has worked) but maybe there’s someone we just haven’t been able to find who’s found something.* *I won’t be active on Mumsnet but if you PM me, I will get a notification.
Why the fuck do you keep trying to go to Scotland if you’re “so” sick?
Two reasons. Where I live in Switzerland used to be fine in the summer. Now, it’s never-ending heatwaves. My veins do not react well to this, and I spend all summer hidden in a single dark room with a room air conditioner. It is an incredibly isolating, depressing thing. So going to Scotland means at least I can sit and be able to see out a window and talk to someone every day and drink tea. Second reason, my best friend lives there and that’s who I stay with. Without him, I would already have done doctor-assisted suicide. My ex-husband hounds me about it every week. It feels sometimes like my best friend (and my friends in America, but they’re so far) are the only ones who care that I’m still here. But no, it’s not the vacation that you think, and I know I’m a complete fool who is risking a myasthenic crisis or higher chance of DVT by doing it. I take an Uber to the airport. I cannot lift my own luggage at all. As soon as I get there, I have to be put in a wheelchair, which is where I stay until I’m seated in the aircraft. Then at the other end, same wheelchairs again, my best friend picks me up and puts me in an Uber, and I sleep for a week to recover from the journey. But I’m just as sick in Scotland. I stayed for three months, and I never left the apartment, so that ought to give you an idea. My options: dark room in Switzerland, alone, or try to push to Scotland, and at least have someone who loves me, even if I’m still housebound.
What about when you tried to prove you weren’t a troll by sharing your medications? There was x/y/z wrong with that.
My list of medications is practically public knowledge and I don’t really care anymore so here’s what I take: Euthyrox (for the thyroid issues from one of the past treatments), Esomep (to protect my stomach from all other meds), 2 hydrocortisone 2x(a small dose for the adrenal failure), Topamax 2x(migraines), Sertraline (I’m depressed, who the fuck wouldn’t be about dying), Mestinon 5x(60mg for myasthenia - you cannot take this without having myasthenia, because my understanding is that works exactly the same as Novichok, except obviously so, so, SO MUCH weaker), Celebrex (for the Behçet’s joint pain), Fentanyl (for the full body pain from Behçet’s, including some anklyosing spondylitis it’s caused). I also inject subcutaneous immunoglobulin, 10g, every five days, and Humira, 40ml, once a week. I know someone asked how you can take that much fentanyl without being catatonic. I don’t know what to say? My hair used to be red and brown, now it’s brown-black and silver, but I’ve always needed 3x the maximum numbing at the dentist. We’re currently switching from fentanyl to morphine, because while morphine is supposed to be significantly “weaker,” it works a ton better for the Behçet’s pain, especially since it’s now in all my major joints which are all going bad now.
Why the hell did you keep calling your ex-husband your “husband” for so long?
That’s embarrassing but a fair question. He divorced me to marry my mate so that she could get a residency card. He promised he wouldn’t treat me differently. And I wanted to believe him because dying divorced and alone, living in the same house with people who wouldn’t notice that I died, was more than I could take. But it doesn’t matter what I wanted. The truth is: my former husband divorced me and married my mate before I died, and he became an ex-husband, and he started making noises about how if he were me, he would already have committed assisted suicide, and I was an absolute fucking idiot for thinking it would be any different.
So why are you bothering to do this now?
Because it really disturbed me that there’s a large group of women who won’t believe anything any future dying MNer writes because they thought I was a bunch of trolls and also that every time there was a nice comment about me, that I wrote it myself. I mean, Pamela (wilsonmilson) has an obituary that’s still online and has a public funeral and they still didn’t believe her.
What do trolls get out of it?
I know there is categorically no way to convince some people that I’m not troll. What I would say is this: I don’t know how trolls do it. I would feel sick every day if I knew I was lying in such a way. And I know this is pathetic, but I would also be a bit scared. That kind of shit has a terrible habit of coming back to bite you in the ass; it’s not exactly karma, but it’s the universe balancing something. I’m ALREADY afraid the shit things I’ve done in this life will bite me in the ass, and none of them are as bad as that. And I don’t see the “benefit” to being a troll. No one has ever offered me money, which I take as a great sign that MN opening statement about not giving anyone your time or money is working. And I reiterate that here: do not EVER give any money to anyone. People should not be asking for anything and they should refuse if you try to give it.
If you want to ask a question, please post it.
If you need to say something to me, or you want to say something positive, or you want my Instagram (as I said, I’m mostly housebound and in pain, so it’ll be boring and may occasionally contain shitty, dramatic, depressed writing), please PM me. Any positive comments would just be viewed as me posting them to myself, so it would be better to keep them off the thread.
So thank you for everything! I learned some very important lessons from this. And I wish you all the very best of luck, with whatever comes next for you. Thanks for listening to a rambling, dying idiot. I really appreciated it.