I fight all day to stay awake & then when it's bedtime I can't sleep! I have to take sleep meds almost every night and they were not made to be taken every night. So frustrating!
@ChronicFatigueSyn right now after missing 4 semesters im taking 1 course down the the usual 5. if that goes well after doing that for a bit i might take 2/5 haha, im trying to play the tortoise. right now im on citalopram and gabapentin. and i take small doeses of lozazepam sometimes. i was on zoloft but switched because zoloft was way too hard on my stomach (heartburn, nausea). what about you, doing any school?
@ChronicFatigueSyn vaccines put a stress on the body, and i think any stress on the body can trigger ME. but no i dont think vaccines played a different role than all i the stressors that were placed on my body at the time.
So, M.E./C.F.S is: 1. Difficult to describe by the patient! (brain-fog & terms lacking from medical ppl related)
2.Hard to Ariculate.
3.People around you don't 'GET IT'.
They don't 'Get It' because they can't *feel* it, and also we are so fogged it is hard to communicate these things on demand, and there is a lack in vocabulary available to us to describe M.E./C.F.S..,.And that IS *worsened* by the fact that the name C.F.S. is,....are idiotically misleading word.
'Claustrophobia' is a brilliant word to describe how it feels when you wake up with M.E./C.F.S. It's funny, I go through this illness feeling so crap all the time physically and you feel so unvalidated, because (perhaps due to brain-fog) it is just really hard to deccribe. The difficulty in describing how the symptoms feel, even in your own mind, (creates a chain-reaction of silence) makes it impossible to articulate to others, which (in turn) disvalidates the symptoms...
I have lucid dreams too. For years and years I'd sleep and have these looooong fun, fascintating dreams with complicated storylines and sometimes thriller-movie like plots. (Even though I know it is not good, as is a sign of poor sleep, my daily life was so monotonous with M.E./C.F.S. that I was grateful for stilmulation! lol!) It was a *good* idea to focus on one topic at a time btw!! It's a daunting thing, as a topic, this M.E. I was just thinking about you the other day. Thx for video! :-)
Good points - thanks. Generally people think cfs = sleep a lot of the time. I have the insomnia. Have tried to tackle it by my own means and have streadfastly refused drugs being an ex-athlete it's just my way of trying to deal with the beast. I'm glad you raised this in your video because I find it one of THE most frustrating aspects of the condition - poor sleep... feel crap.. reasonable sleep.. feel crap.. good sleep (v. rare).. still feel crap. Thanks & good wishes to all tuning in
@MultiYesindeed i think no drugs and better than taking drugs were possible, but sometimes circumstances can call for a pharmaceutical intervention. all things in moderation.
@ChronicFatigueSyn this sounds very very similar to me. brain fog at start and brutal malaise/death feeling i was initially stunned by the brutality of it. also, i received some vaccines before getting really sick. and yeah i had some dizziness at the start but not really anymore also the brain fog has subsided which is good. how long have you had ME?
@ChronicFatigueSyn i think what triggered it was moving to university and spending more energy than i ever had before. I went to parties, worked out, studied hard to a much greater degree than i ever had before. And so it was gradual.
I fight all day to stay awake & then when it's bedtime I can't sleep! I have to take sleep meds almost every night and they were not made to be taken every night. So frustrating!
ironbith 4 months ago
@ChronicFatigueSyn i hope you take a reduced course load it would be a shame to set back your progress through overexertion
Dcebes 4 months ago
@ChronicFatigueSyn right now after missing 4 semesters im taking 1 course down the the usual 5. if that goes well after doing that for a bit i might take 2/5 haha, im trying to play the tortoise. right now im on citalopram and gabapentin. and i take small doeses of lozazepam sometimes. i was on zoloft but switched because zoloft was way too hard on my stomach (heartburn, nausea). what about you, doing any school?
Dcebes 4 months ago
@ChronicFatigueSyn vaccines put a stress on the body, and i think any stress on the body can trigger ME. but no i dont think vaccines played a different role than all i the stressors that were placed on my body at the time.
Dcebes 4 months ago
It should not be our responsibility to create a medically valid sounding vocabulary while being treated by *Doctors* as if its 'all in our head'.
Sorry dude. Vent 0ver. XO
Claustrophobia.........also worsened by waking up and knowing your doctors doesn't realise you feel this bad when you wake up. :-)
hi771lrt 4 months ago
So, M.E./C.F.S is: 1. Difficult to describe by the patient! (brain-fog & terms lacking from medical ppl related)
2.Hard to Ariculate.
3.People around you don't 'GET IT'.
They don't 'Get It' because they can't *feel* it, and also we are so fogged it is hard to communicate these things on demand, and there is a lack in vocabulary available to us to describe M.E./C.F.S..,.And that IS *worsened* by the fact that the name C.F.S. is,....are idiotically misleading word.
hi771lrt 4 months ago
'Claustrophobia' is a brilliant word to describe how it feels when you wake up with M.E./C.F.S. It's funny, I go through this illness feeling so crap all the time physically and you feel so unvalidated, because (perhaps due to brain-fog) it is just really hard to deccribe. The difficulty in describing how the symptoms feel, even in your own mind, (creates a chain-reaction of silence) makes it impossible to articulate to others, which (in turn) disvalidates the symptoms...
hi771lrt 4 months ago
Lol...'I try to have only my bed in my bedroom...and maybe a light...So I can see my way TO the bed! HAHAHAHA :-D
hi771lrt 4 months ago
@hi771lrt : D
Dcebes 4 months ago
I have lucid dreams too. For years and years I'd sleep and have these looooong fun, fascintating dreams with complicated storylines and sometimes thriller-movie like plots. (Even though I know it is not good, as is a sign of poor sleep, my daily life was so monotonous with M.E./C.F.S. that I was grateful for stilmulation! lol!) It was a *good* idea to focus on one topic at a time btw!! It's a daunting thing, as a topic, this M.E. I was just thinking about you the other day. Thx for video! :-)
hi771lrt 4 months ago
@hi771lrt yeah my dreams are more intense and interesting now than before. sometimes unpleasant but interesting none the less
Dcebes 4 months ago
@Dcebes Ok, not just me then with 'intense and interestig dreams' That is interesting to know. ;-)
hi771lrt 4 months ago
Good points - thanks. Generally people think cfs = sleep a lot of the time. I have the insomnia. Have tried to tackle it by my own means and have streadfastly refused drugs being an ex-athlete it's just my way of trying to deal with the beast. I'm glad you raised this in your video because I find it one of THE most frustrating aspects of the condition - poor sleep... feel crap.. reasonable sleep.. feel crap.. good sleep (v. rare).. still feel crap. Thanks & good wishes to all tuning in
MultiYesindeed 4 months ago
@MultiYesindeed i think no drugs and better than taking drugs were possible, but sometimes circumstances can call for a pharmaceutical intervention. all things in moderation.
Dcebes 4 months ago
@MultiYesindeed err butchered my response what i meant to say....i think no drugs are better than taking drugs where possible............
Dcebes 4 months ago
@ChronicFatigueSyn how are you now?
Dcebes 4 months ago
@ChronicFatigueSyn this sounds very very similar to me. brain fog at start and brutal malaise/death feeling i was initially stunned by the brutality of it. also, i received some vaccines before getting really sick. and yeah i had some dizziness at the start but not really anymore also the brain fog has subsided which is good. how long have you had ME?
Dcebes 4 months ago
@ChronicFatigueSyn i think what triggered it was moving to university and spending more energy than i ever had before. I went to parties, worked out, studied hard to a much greater degree than i ever had before. And so it was gradual.
Dcebes 4 months ago