Amy
@alexandrite113
Severe ME. Tweeting into the void
With the help of a very smart friend I have figured this out — it’s likely because I had to go back on Ketotifen after accidentally going off it completely for 4 days. Since starting the Ketotifen back up again I’ve been napping like crazy (sedation) and that’s when the cognitive…
Is anyone else freaked out by their brain fog getting worse? I really am beginning to wonder if it’s actually dementia caused by LC. Instead of being really bad at the beginning and then resolving, mine seems to have gotten worse over time, irrespective of my baseline.
This is devastating. @Bridget_OShea’s last experience was not being believed and being dismissed by her own mother just before she died. It’s what this community goes through over and over. I hate this world
I called my mom. I told her I'm afraid I'm going to die. Her response? She hung up. 😫#MECFS
Type A personalities actually like to work. This is hell. You can barely get out of bed, but you feel worse after you sleep not better, after a decade, you don't have friends in real life because they don't understand illness that never gets better, and you aren't fun anymore.
I ate sweets three days in a row because I was feeling depressed and wanted to cheer myself up. Now I am depressed AND in a crash. God dammit
Please help Rhi out with affording life-saving medication and housing 💚 even a little bit helps. 🎁
I am fully bed ridden in crippling pain and can’t even afford my meds or a roof over my head without support because of this. If I have to go back to hospital I’ll end it I can’t handle another round of that Give a little coming soon, PayPal is [email protected]
I clawed my way back from very severe, only to end up with a progressive degradation of collagen, which will likely eventually lead to CCI and immobility/death. And if you judge me for posting a pretty picture sitting up & think “she can’t be that sick”…. then fuck you too. 🖤
Doctors like this turn my stomach. They laugh at us and then offer palliative care. Disgusting.
I was already very severe. Went to the appointment in a wheelchair that left me crashed for weeks. He laughed when he saw me in the wheelchair, asked me to at least make the effort to walk to his office. I bursted into tears. Doctors all over the world have blood on their hands
Don’t ever meet your heroes. (In fact, don’t even message them…😅) It’s better to be your own hero, if you can 🩵
Is there a danger to re-introducing Ketotifen too quickly? I accidentally took 0 of my Ketotifen and double my Cromolyn for the first 4 days of July bc my pharmacy mixed them up (and I stupidly didn't check). This gave me insomnia but nothing worse. Now I am back on my old lower…
Links next post below. Still at $0 for this.
I need stretcher transportation to go to a cardio appointment despite being very severe. I don’t know the specifics yet. A lot is happening rn (I may need to move next month too 😭 so prices vary). But for what I know rn could be between $365-700
My baseline has gotten better since the summer came into full swing, so -- tomorrow I'm going to try watching a movie for the first time in almost a year. 😱 (It's a doc about the first humans, a subject that always fascinates me). Wish me luck guys.
We cannot treat each other this way 👇 Do you know how much plastic it requires everyday to keep me alive? A little pile. Everyday. for over a decade now. Probably a lot more harm to this world than my life contributes to this world. Should I kill myself? Maybe…
Waffled but I’m going do say this, because I have so many mutuals with this person - @KristinaEBP spent all morning calling me a murderer and bullying me (a person whose life is at serious risk due to extreme medical harm and neglect) just because I used ChatGPT to parse some…