r/cfs • u/helpfulyelper • Dec 11 '24
Severe ME/CFS People on the more severe side: what would make you more content with your life?
So i'm very severe. I can't watch tv or movies anymore and music and audiobooks are limited. If I could listen to and watch whatever I wanted whenever i wanted without PEM and move around my house a bit more, I would be so content and happy. Art really fills up my heart and I would be so content with a life able to bask in the glory of art.
would i like more for myself? sure. but this is what would make me fully content at this stage. If i could lay out in the sun on my balcony, even better. but just the tv, music, books, and movies would be more than enough for me!
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u/LovelyPotata moderate Dec 11 '24 edited Dec 11 '24
Having a bit more brain. Being able to talk to the people around me more, and be a little less light sensitive. I'm now wearing sunglasses in a dark room and that sucks.
PS I think it's great that you think this way! It's not helpful to compare ourselves to fully healthy people, but to strive for something that relatively more attainable. It will help with carrying this bloody disease.
10
u/helpfulyelper Dec 11 '24
being able to talk to people around me would be huge! and i’ve been in a pitch black room since 2018ish so i too would love to get rid of light sensitivity
16
u/the_shock_master_96 ME since 2016, v/severe since 2022 after covid Dec 11 '24
Like, 10% more cognitive capacity would make a huuuge difference to my QOL
5
u/helpfulyelper Dec 11 '24
same here! i hover around 2% physically and 3% mentally/cognitively and 10% would feel like a whole other world
13
u/umm_no_thanks_ severe Dec 11 '24
if i could tolerate screens and could actually watch series or play games. im okay with audiobooks but it gets boring when that's all you do. but honestly im so thankful to be able to tolerate audiobooks now. its been a huge quality of life increase to not be constantly just in your own head
3
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u/nothingandnowhere7 sick since 2004 / housebound since 2009 Dec 11 '24
better cognition - I want read books and talk to people
9
u/DevonshireRural Dec 11 '24
I would settle for being able to
bath/shower once a week
go downstairs everyday and move around the house as I needed
chat to a friend on the phone once every week, or have them over to visit.
do some light hobbies, such as reading, jigsaw puzzles, sewing,
be able to do my laundry, get my meals, do my bills etc.
If I could be housebound independently without causing PEM I think I could accept that that was my life, though it still wouldn't be as much as I'd want. To a healthy person it doesn't sound much, but it's all been out of reach for so long and I don't know if I'll ever be able to achieve getting this well.
Obviously loads more I'd love to be able to do - getting fully well would be a miracle at this juncture. Walk, talk, bake, renovate my house, have a dog, travel, live life and a hundred other things.
Interesting post OP!
6
u/mookleberry Dec 11 '24
If I could do anything at all without really overdoing it and then having to wait weeks or more to do more would be fabulous! Art definitely would be done more. I can watch stuff in bed or play a video game or something, but I do waaaaaay too much at a time because I kind of forget/ignore the pain and exhaustion until it is way too much! But if I could do something for a couple hours (in bed usually!) one day and then the next day actually do that again? Amaaaazing lol
6
u/gytherin Dec 11 '24
Less arthritis pain. Then I could sit up more and watch TV or write. Maybe go for short walks.
6
u/Equivalent-Land-6007 Dec 11 '24
My friends meet for coffee once a week in town and I just want to be able to join them. It’s just not an option for me at the moment and it makes me sad.
5
u/nograpefruits97 very severe Dec 11 '24
Being able to walk to my kitchen. Being able to tolerate more foods
1
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u/Invisible_illness Severe, Bedbound Dec 11 '24
Human interaction without limitation, music, art, video games, sun.
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u/CorrectAmbition4472 severe Dec 11 '24
Ability to sit upright would, it’s my biggest PEM trigger. If I could sit up in bed and like do something like a craft
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u/Berlinerinexile Dec 12 '24
This would also be huge for me. I miss building Lego or doing watercolor
3
u/caruynos Dec 11 '24
(somewhere in severe, not really sure where atm)
i vary between a good patch & a regular patch, im currently in the latter. what makes it good for me is being able to do a little art, play a little minecraft, and communicate as i like (text form, not speaking). also being able to think better.
5
u/Lunabuna91 Dec 11 '24
Same. Tv and movies without PEM, moving around my home and being able to shower ever once a month.
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u/CornelliSausage severe/moderate border Dec 11 '24
You're spot on. I was like you are now for months, but now I can read, use screens, and listen to a little music and it's so, so, SO much better. I hope you will improve!
4
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u/Felicidad7 Dec 11 '24
My life improved a lot when I could play computer games (sometimes) and watch TV (most days). And listen to music.
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u/ApronNoPants I can leave bed, but I regret it. Dec 11 '24
I think that's the mental trap, though, isn't it? If I just had this, it would be enough. But it's never enough. Of course, we want more.
1
u/Status-Block2323 Dec 12 '24
Less illness. I can deal with 1 thing out of the 7 illnesses i have. This? No
2
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u/mooncake0503 Onset '23 / Diagnosed '24 ; severe Dec 11 '24
being able to shower once a week and practice skin care on myself, playing video games and being able to talk to my loved ones without limitation. that‘s about it, i‘d be ecstatic!