Char🌹

Living in a nightmare since 2020 LC/ME

[Char🌹 @justasickgal]

Guys I’m so sorry I haven’t responded, I am still here. I did not expect any comments. Wow❤️‍🩹

Thanks to every single one of you for reaching out. It means a lot 💙

I’m trying to work on my post about what has happened to me but I can’t use my phone long.

[Char🌹 @justasickgal]

I’m unfortunately in a very serious severe deteriorating state since February and won’t be here much longer.

I am now actively dying my body is breaking down in an extreme state rapidly.

I want to share my situation and symptoms before I sign out of here

[Char🌹 @justasickgal]

@kirstler31 @Naomi_D_Harvey Yeh the only way I got it was because of the suicide attempt hospital and severe sleep deprivation no other sleep meds touched me Daridorexant caused severe vertigo that never went away. I think they will only give it if it’s last resort and your saying your sucidial etc tbh x

[Char🌹 @justasickgal]

@AndrewG76201347 @kirstler31 What meds made you improve? Did you have vestibulur vertigo issues too?

[Char🌹 @justasickgal]

@kirstler31 @Naomi_D_Harvey Also if you feel sedated on them don’t worry the sedation effect fades after regular usage

[Char🌹 @justasickgal]

@TWestphalia Omg how did he die exactly? This scares me

[Char🌹 @justasickgal]

@AdamB92_ I’ve seen alot of people where both children have it, or mother and daughter etc . From my knowledge im the only one in my family with this it’s strange and no worries no rush x

[Char🌹 @justasickgal]

@AdamB92_ How is your brother doing? Is he the same severity? I can’t believe you both have this it’s unbelievable and this should be studied but no one gives a shxt! Makes me furious! X

[Char🌹 @justasickgal]

@AdamB92_ I’m thinking of you Adam. 🫂 ❤️

[Antoine 🇫🇷 V.Severe MECFS @AntoineMECFS]

20 months ago today my life stopped. Still can't believe any of it...

Just give me the ability to watch shows again and eat enough and I'm willing to last 10 more years. But thinking about one more year like the last 18 months, I just can't. I don't have it in me.

I need to be able to distract myself. Can't continue to lie with my eye mask, crippled by non-stop symptoms, stuck in this battlefield that is my mind. #MECFS

[Char🌹 @justasickgal]

@c3vvno Oh god what symptoms?

[Char🌹 @justasickgal]

@c3vvno @PhotonTurtle How long you been on benzos for?

[Char🌹 @justasickgal]

@c3vvno How have you found the taper?

[Char🌹 @justasickgal]

@c3vvno Are you tapering off benzos? I need to taper diazepam 10mg but I’m already so severe I fear I’ll die

[Char🌹 @justasickgal]

@aimee_hirayama @AntoineMECFS @MartinMoltke Definitely not just for Germans… if you have a diagnosis of ME OR LC and a psych letter to say your sound of mind it can be done. So many do it in Germany. I lost my friend from the uk he was suffering with ME

[Char🌹 @justasickgal]

@aimee_hirayama @AntoineMECFS @MartinMoltke I know someone who went to Germany from the uk and got it done. I’m in touch with someone from Germany who can do it. Trust me there’s ways round things

[Char🌹 @justasickgal]

@AntoineMECFS @MartinMoltke If someone comes with you is that illegal? I thought you have to do it on your own or the person going with you can be arrested for knowing about the assisted dying….

[Romain @32Sfc46582]

Apparently, today is the day.

A friend rightly pointed out to me in private that today is Severe ME/CFS Day, yet almost no one but ME/CFS patients actually knows it...

Cruel, but true. Sick since at least January 2022, I’ve deteriorated very slowly, going from very mild to severe/very severe by March 2025 (though I can still eat and use the toilet on my own)
I’ve experienced every stage of the illness. And honestly, I miss the moderate stage terribly...
What does a severe ME/CFS day look like ?
- Waking up feeling awful at 10 a.m. after a night of "awake sleep."
- Taking meds for POTS and LDA they don't really work anymore, but you never know.
- Drinking a liter of water with electrolytes so I can use the toilet.
- My wife comes to give me a hug and brings me an apple in bed.
- Toilet.
- Twitter and https://t.co/4W5afXWo5u.
- A light lunch.
- Twitter.
- Waiting until 4 p.m. to eat two rice cakes. - Toilet.
- Twitter and https://t.co/4W5afXWo5u.
- My daughter brings me my meal tray.
- Brushing my teeth.
- Podcast until 10h30 p.m.
- Sleep medication.
- 10h30 p.m. to midnight: lying in the dark, thinking about my life before.

And the same day, over and over again. No joy, no happiness just survival. Honestly, it’s medieval torture. Without the death part. No, not the final breath yet. Apparently, we have to suffer more.

Always more.

And even then, I’m more of a "severe" case on the milder end of the spectrum. My thoughts go out to the very severe cases who are even less fortunate than I am.