#spoonie problems
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wishing everyone a low pain and manageable symptom day youve got this.
#chronically ill#disabled#chronic fatigue#chronic pain#disability#actually disabled#chronic disability#disabled community#spoonie problems#disablity#disabled positivity
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So sick of people seeing "silly" gadgets in videos and claiming whoever uses them are lazy.
Disabled people exist.
Most of those "silly" gadgets are for us.
Just because you don't have use for it doesn't mean it's not important for someone. You may find it stupid but it may give someone freedom in a way they haven't had for who knows how long.
"Why don't you just (task that's hard for disabled people to do)!" Why don't you shut the fuck up.
Stop making fun of gadgets that are for disabled people.
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when the effects of a medical condition are also the triggers for that medical condition
#🤌#chronic illness#chronically ill#fibro#fibromyalgia#spoonie#spoonie problems#disability#disabled#physical disability#physically disabled#medical shit#chronic pain#chronic fatigue
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One thing a lot of people don’t understand is I can figure out all my illnesses, what causes flares, what to avoid, what I can do, etc... and stil my disabilities will just up and change the rules completely whenever they want.
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#spoons#chronic illness#spoonie problems#self care#pace yourself#self compassion#you are enough#you do enough#you have enough#give yourself permission to rest#no guilt#no shame#adulting#doing your best#don't overdo it#stop the glorification of busy#to heck with the hustle#work culture#grind culture
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It's actually crazy that some ppl think that we are pretending to have a chronic illness for attention(?) or something when I've actually never been more ignored & had less attention in my entire life. I am alone🙃✨
#chronic life#chronically ill#chronic illness#chronic pain#fibromyalgia#myalgic encephalomyelitis#spoonie life#spoonie problems#chronic fatigue
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When you call disabled people inspiring for doing ordinary things, the real message is this:
“Wow, I’m shocked that you have the guts to exist! You mean you don’t hate yourself enough to never leave your house? HOW?? So brave!”
It isn’t a compliment. It’s insulting. Stop it.
#disability#disabilities#actually disabled#chronic illness#chronic community#disability life#cripple punk#disability problems#activism#disability advocacy#disabled#actuallydisabled#chronic pain#chronically ill#spoonie life#cripple life#spoonies#chronic disability#chronic fatigue#spoonie problems#spoonie
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I just happened to notice that both my scar pain & asthma get worse when I'm on my period/have pms (post/pre menstrual syndrome) and was curious about other ppls experiences ((im about a 4ish/5 cause its BAD))
#Chronic pain#chronic illness#chronically ill#spoonie#spoonie problems#spoonie life#spoonies#menstruation#period cramps#menstrual cycle#Period havers
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Spoonies & new symptoms
Is it a new symptom of an illness I already have, or a different new illness?
Is a side effect of a new treatment? If so, which one?
*vaguely searches Internet*
Internet: "Call 911 now! Go to A&E!!!"
Me: I will choose to ignore it until it becomes a problem.
#spoonie#endometriosis#fibrospoons#spoonie problems#chronic illness#chronic pain#mirena coil#elhers danlos syndrome#fibromyalgia#spoonie life#my foot keeps going numb#it's probably fine
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Especially the past couple of days. WTF body? Get with the program!
#fibromyalgia#chronic pain#spoonie problems#arthritis#chronic illness#chronic illnesses#fibro#chronically ill#orthostatic hypotension
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Im really tired of medical professionals not realising that their behaviour and their colleagues behaviour literally traumatises people.
#disabled#chronically ill#chronic fatigue#chronic pain#disability#actually disabled#chronic disability#disabled community#spoonie problems#disablity#chronic illness#medical trauma
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Things I want to hear less as a chair user:
But you're so young? (So? I'm still disabled!)
Wait till you're older! (Thank you for reminding me that I will lose even more mobility and freedom as I age, growing old wasn't making me anxious enough)
Any jokes about me walking. (Seriously you're not funny. Stop.)
What happened to you/are you hurt? (That's frankly not your business. Quit asking)
I'm so sorry/that's awful (Pity. I fucking hate the pity.)
Bless you/r heart (what did I say about pity? I'm not a sad puppy in a shelter commercial)
Have you tried [redacted], what have you tried to help/fix it? (Didn't ask + don't care. Mind your own business)
Can I play with your chair? (No!? It's not a toy it's my expensive mobility aid! That I'm using???)
Hope you get better soon! (I won't, thanks)
Parents telling kids to ask me why I'm in a chair. (Just. Tell. Your. Kid. YOURSELF. "He can't walk/stand so he uses the chair to get around". There: that wasn't fucking hard)
Any mentions of someone being "stuck" in a chair. (Just. No. Stop talking, stop acting like chairs are a prison.)
Sick of the way people talk when they see my chair. Also stop staring? I'm not an exhibit.
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I'm so tired of getting a new medication and seeing may cause [input other main symptoms].
Oh, you want to make symptom x less of a problem? No worries we'll just make your other main problems worse.
Every damn time.
#chronic illness#chronically ill#spoonie#spoonie problems#disability#disabled#physical disability#physically disabled#chronic fatigue#chronic pain
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One of the worst sins of subtitles is when closed captions cover the words translated in a movie/show with (speaks foreign language)
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Ableds really dont get that plans being made, changed or yes, even cancelled (especially when you have already used spoons getting ready) last minute is really annoying and distressing in a different way than it is for them.
Yes for you (abled person) its annoying the swimming pool down the gym is full of kids so you dont want to go. I, however have used spoons already getting ready to go & cancelling last second, so now I have to get changed back out of my costume and unpack everything from my bag, making me more tired & in pain, is infuriating.
And dont ask someone “are you annoyed now?” if you’re going to get pissy if they say yes… Yes, I know its not your fault but its still annoying
And they’re saying about going this evening now, saying this AFTER I’ve already changed again out of my costume and into my normal clothes… like no, the opportunity has been and gone. I’m tired, in pain and now I’m really annoyed, I’m not going and putting myself though even more stress
#abled people’s bullshit#ableism#disabled#disability awareness#disability problems#spoonie problems#spoonie life#spoonie#chronic pain#chronic fatigue#chronic illness#fibromyalgia#chronic fatigue syndrome#me/cfs#cripplepunk#crip punk#physically disabled#physical disability#neurodivergency#neurodivergent
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"You were fine as a child/teen"-Was I though?
I've been told countless times that it's unfathomable, that it doesn't make sense, that I am chronically ill now, because I was "healthy" growing up, I was "active" and "normal."
"you were fine" they say
Frustratingly, they are wrong. I was not "fine" and I masked my symptoms heavily. In a lot of cases I didn't know that what I was going through was abnormal.
I remember the many times a year (every month/every other month) I was ill with cold & flu, tonsillitis, chickenpox, rashes, broken bones, sprains, stomach problems, pain and exhaustion.
I remember the 2 years in my teens where I had chronic knee and leg pain that was blamed on growing pains. It affected me so much my attendance in school dropped to 62% & irritated my mum so much that I failed to continue finding medical care for it and "carried on" as if I was fine.
Growing up, being ill was a burden, almost not allowed. If you were ill, you were an annoyance, a nuisance, forced to get on with it. It irritated the people around you, if you were ill with a n y t h i n g in my childhood home.
I remember throughout my whole childhood that at least one week out of the month, I'd get so exhausted I would come home from school and go straight to sleep until shouted down for dinner and I'd go back to bed.
Many times I remember coming home from school and college absolutely depleted of everything and faceplanting on my bed for 2 to 3 hours.
I remember how much I wanted to be involved in some activities but didn't have the energy and was accused of being lazy, anti social or ungrateful of opportunities.
I remember being hospitalised with chronic stomach pains, they suspected appendicitis, but when they could find nothing I was released home with nothing further done for another 15 years. I was accused of attention seeking or just wanting to skip out school.
I remember being unable to tell anybody how I felt whether it was physical or mental. When I did reach out I was told I'm too soft, I'm being dramatic, I'm just making it all up. When I did say "I'm in pain" I was told its not that bad, I'm not dying and that I "won't get any sympathy" from them.
When I went to University & got freshers flu, I was bed-bound for 9 weeks but told it was depression.
Eventually, I couldn't carry on from all the above. Now I'm bed-bound/housebound for life.
Please, tell me again, that I was "fine"
#chronic life#chronic pain#chronically ill#chronic illness#chronic fatigue#spoonie problems#fibromyalgia#myalgic encephalomyelitis#pots#ptsd#joint pain#chronic disability#chronic fatigue syndrome
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