In the abyss. v severe #mecfs fighter (+11 years)
@AbyssPearl
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On essaie de tenir le coup 🧠🫀 fighter. survivor. #mecfs, depanx, #pots, allergies & other. I'm one of the millions missing. chronic illness FR-EN
Alone
Joined November 2013
and what happens when you're the weakest, paralysed, not heard, unable to communicate or dismissed. I refuse to be stuck in a place where abuse happen and I am alone. I do not want it Do my words even matter.
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People with severe #gastroparesis or similar conditions, how do you manage ? What do you do to survive, not to starve to death ? And if you got testing and actual help: How did you get access to the test finally ? What solutions were given to you ? What help ?
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I NEED TO HAVE SOMETHING TO MAKE ME SLEEP this insomnia is going to kill me. It almost did twice. Like really really close. Now the meds I have, had, don't work anymore. I am spiraling down, the lack of sleep flares all of my illnesses I cannot survive this
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does abilify / lda, make you gain weight, and help gastroparesis ? is there anyone who tried lda and olanzapine ? What were the differences ?
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Things I tried to eat at 4/5 pm are coming back up it's 8pm
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And what do you do when you have very severe me + pots + mcas + a stomach who does not wanna work properly ?
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does abilify / lda, make you gain weight, and help gastroparesis ? is there anyone who tried lda and olanzapine ? What were the differences ?
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J'ai toujours pas les examens dont j'aurais besoin accès aux spécialités liés à mes maladies et mes symptômes, pas les tests, soit on me donne rien soit on me donne un médoc qui fait rien ou qui colmate le problème temporairement sans JAMAIS chercher ou regarder à la source.
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C'est la même histoire, toujours. L'accumulation sur 15 ans des mêmes symptômes qu'ils ont daigné être insignifiants et que comme j'ai pas de papiers ou documents pour appuyer ce que je dis parce que j'étais une ENFANT, aujourd'hui on me prend pas au sérieux.
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Parce que là dedans il y aurait (eu) tellement de preuves. Déjà que j'invente rien et aussi et surtout que mes problèmes graves de maintenant étaient déjà là avant et que j'ai demandé de l'aide pendant 15 ans où je me faisais envoyée balader. J'ai failli en mourir. Mourir.
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jamais vu ou su si ça existait. À part si c'est l'équivalent du nouveau truc là, Mais bref ce que je veux dire c'est que du coup où elles sont les preuves de tous les refus de prises en charge de mes symptômes et mes maladies depuis que je suis jeune ado ?
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Est-ce que meme en France on a un dossier médical depuis enfant qui suit tt ce qu'on nous fait et nous fait pas parce que c'est pas clair. Tous les anglophones me disent de lire au médecin de "put it in my chart" quand ils refusent des examens, ou concluent des choses mais j'ai
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i'm wasting my energy just because I am doing what doctors are supposed to do. Not me.
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i say friends but are they I mean I considered them as But they surely don't consider me as a friend. because what do I give ?
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it's also the contrast with other stories where families and friends gather and do something, anything. and here I have no reaction. I do not matter I wish I was never born at this point I've been through too much and gave myself too much, always doing for them nothing in return
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it's not even ignoring me it's ignoring that I am dying and they don't care or don't wanna hear about it or do not react do not reply or are just being horrible reactions or none. It's like did you ever care? Like your friend is dying hello
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I'm on more meds since and I sleep less and worse.
So here's an example of what I deal with, this is this past week. It's been worse. When I almost died from it. But this isn't livable either. It's been like this for too long. Months years. I do not have deep sleep (15mn-1h max a night) I am exhausted. #pwme #insomnia
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do you have any papers on extreme insomnia in mecfs #pwme please thank you I am in agony
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@NeleHelena "She didn't have f****** anxiety. She had a medical condition." Labeled "hypochodriac" but "absolutely massacred inside." Tortured and abused by medical doctors for 20+ years; never even performed a laparoscopy. #medical #malpractice #misdiagnosis
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