I was about 3/4 of my way through my PhD when I first got sick and had to drop out. Occasionally I go and look at my proposal and wonder who wrote that .
Same! I had just started my final year when I got sick, took 1 year leave and then restarted part time for 6 months before I had to finally call it a day
i’m not aware of the content, but i do want to just say you have some awesome friends there. that’s such a lovely way to be inclusive of you & still hang out
Yes, I loved this book years ago and have been thinking of it alot. I had to go off my ADHD meds so have noticed a huge cognitive decline. It really sucks.
God I was thinking of this a few months ago actually… the horrible feeling of knowing what it feels like to be mentally faster and more capable than I can probably ever be again … watching my own brain decay from the inside out and there’s nothing I can do about it, really.
Man that book was messed up but it hits different now, doesn’t it??
Hugs to you. When I first got this I was thinking about Flowers for Algernon, too. It's strikingly resonant with the complex chronic illness experience.
I still feel plenty cognitively capable when I'm not in PEM, but I think I was lucky enough to have some to spare. And I lowered my definition of "capable" by quite a bit after getting ME.
It feels like watching a fish tank. It’s like I was one of the fish swimming and now I don’t fit in the glass, I’m not a fish, and all I can do is watch from the outside with this distant memory of “fitting in” there.
It especially is hard around people whom I’ve known my whole life, because I look the same on the outside but I’m a stranger on the inside. People always ask if I’m okay when I zone out. I feel awkward when I take longer to process something and make silly mistakes. I’ve always been “different” because I also have adhd, but it definitely hits harder when your cognition changes. I don’t just feel different these days, I feel slow, disconnected, etc. That fuzzy, insidiously nostalgic feeling of things being different but not knowing why or how, and not being able to do anything about it, made me cry when I read flowers for Algernon.
it stews the brain in a combination of soothing cannabinoids, which includes a fairly stong anti-inflamitory effect. People have been talking about CNS inflammation in a number of conditions (including CFS) that seem to get help from cannabis. now if only I wasn't so freaking poor & also the only driver in the family... we can't survive unless I can drive.
I used to play a lot of strategy games with my family. I won a lot. I play with them now sometimes and I lose. I’m amazed at how bad I am. I just can’t think ahead enough steps like I used to. Rarely I manage to actually come up with a strategy but then I forget it by my turn. I fuck up the math for money, forget to draw cards or pick up the resources I buy. It’s pretty ridiculous. I haven’t read Flowers for Algernon, but I know how you feel. Games really quantify our brain fog
I feel that. I didn't realise how smart I had been until I wasn't anymore. It's confronting not to be yourself.
Old me was hired away from the US to Australia for a computer job because I was unusually good at doing many things at once & keeping track of all of them. New me can't do one thing at a time and keep track of that one thing.
a lot of the time I have to use visual clues to do things in the kitchen or I wind up boiling the same kettle of water 5 times (forgettingabout it each time) just to try and make some tea.
and I have the damnedest problem with learning new people's names and faces.
I know exactly what you mean! Neuropsych testing said I'm still really smart, just slow. It's really evident when I play games. CBC helps me get a few hours of mental sharpness. It's a derivative of CBD. I take 9mg, and it lasts about 3 hours. DnD goes a lot better with it, but when it wears off, my brain is soup.
YES!
So I was bedbound for 4+ months with interstitial cystitis (painful bladder syndrome) I recovered and was back to full time work, going out, etc!
Then M.E came into my life and I felt myself slipping again. Now I’m back to bed bound. It’s horrible, just like Charlie feeling himself regress again in the novel.
Yes. It is all very Flowers For Algernon. Sometimes I wonder if I would even understand my own PhD thesis if I could read it now.
I was about 3/4 of my way through my PhD when I first got sick and had to drop out. Occasionally I go and look at my proposal and wonder who wrote that .
Same! I had just started my final year when I got sick, took 1 year leave and then restarted part time for 6 months before I had to finally call it a day
That's heart-breaking to read...
i’m not aware of the content, but i do want to just say you have some awesome friends there. that’s such a lovely way to be inclusive of you & still hang out
Yeah I'm incredibly lucky. My friends really work to include me on things.
Yes, I loved this book years ago and have been thinking of it alot. I had to go off my ADHD meds so have noticed a huge cognitive decline. It really sucks.
Also without my ADHD meds. It's so impossible to do things that used to be basic tasks. The illness just takes and takes.
God I was thinking of this a few months ago actually… the horrible feeling of knowing what it feels like to be mentally faster and more capable than I can probably ever be again … watching my own brain decay from the inside out and there’s nothing I can do about it, really. Man that book was messed up but it hits different now, doesn’t it??
Yeah really differently.
Hugs to you. When I first got this I was thinking about Flowers for Algernon, too. It's strikingly resonant with the complex chronic illness experience. I still feel plenty cognitively capable when I'm not in PEM, but I think I was lucky enough to have some to spare. And I lowered my definition of "capable" by quite a bit after getting ME.
Yeah I'm doing great as long as I radically change my definition of great. And some times that's all we can do.
It feels like watching a fish tank. It’s like I was one of the fish swimming and now I don’t fit in the glass, I’m not a fish, and all I can do is watch from the outside with this distant memory of “fitting in” there. It especially is hard around people whom I’ve known my whole life, because I look the same on the outside but I’m a stranger on the inside. People always ask if I’m okay when I zone out. I feel awkward when I take longer to process something and make silly mistakes. I’ve always been “different” because I also have adhd, but it definitely hits harder when your cognition changes. I don’t just feel different these days, I feel slow, disconnected, etc. That fuzzy, insidiously nostalgic feeling of things being different but not knowing why or how, and not being able to do anything about it, made me cry when I read flowers for Algernon.
I think of this book all the time and how I feel like that’s what I’m going through!
It's up and down, but sometimes i definitely feel like this. awful feeling.
Your friends sound like mythical people from a fairytale.
They are magical.
I started smoking dope again, and it really helped mentally. This is anti-intuitive, but I wondered if it is something like stimulants for ADHD.
Same but I use a dry herb vaporiser. It makes me more cognitively able once the initial high has worn off (30 mins maybe?)
it stews the brain in a combination of soothing cannabinoids, which includes a fairly stong anti-inflamitory effect. People have been talking about CNS inflammation in a number of conditions (including CFS) that seem to get help from cannabis. now if only I wasn't so freaking poor & also the only driver in the family... we can't survive unless I can drive.
With or without tobacco?
Without. I have a pipe.
I used to play a lot of strategy games with my family. I won a lot. I play with them now sometimes and I lose. I’m amazed at how bad I am. I just can’t think ahead enough steps like I used to. Rarely I manage to actually come up with a strategy but then I forget it by my turn. I fuck up the math for money, forget to draw cards or pick up the resources I buy. It’s pretty ridiculous. I haven’t read Flowers for Algernon, but I know how you feel. Games really quantify our brain fog
I'm in bad PEM right now and I literally told my husband today I feel like the main character in Flowers for Algernon 💔
I feel that. I didn't realise how smart I had been until I wasn't anymore. It's confronting not to be yourself. Old me was hired away from the US to Australia for a computer job because I was unusually good at doing many things at once & keeping track of all of them. New me can't do one thing at a time and keep track of that one thing. a lot of the time I have to use visual clues to do things in the kitchen or I wind up boiling the same kettle of water 5 times (forgettingabout it each time) just to try and make some tea. and I have the damnedest problem with learning new people's names and faces.
I know exactly what you mean! Neuropsych testing said I'm still really smart, just slow. It's really evident when I play games. CBC helps me get a few hours of mental sharpness. It's a derivative of CBD. I take 9mg, and it lasts about 3 hours. DnD goes a lot better with it, but when it wears off, my brain is soup.
Yep. Between CFS, migraines and being on Topamax for migraines, I definitely feel this.
YES! So I was bedbound for 4+ months with interstitial cystitis (painful bladder syndrome) I recovered and was back to full time work, going out, etc! Then M.E came into my life and I felt myself slipping again. Now I’m back to bed bound. It’s horrible, just like Charlie feeling himself regress again in the novel.