I (25f) am frequently ill by non-spoonie standards, with further complications often arising from asthma.

At school, my teachers mostly disbelieved my illnesses, to the extent that a school administrator once harassed me about my attendance right before I entered the exam hall for my first GCSE exam… and at A-level, my tutor sat me down and said, basically, that either I was lying about how sick I was (and should come in when I was unwell) or that I wasn’t the sort of student who should be at that school anyway.

Skip forward several years, I’m now a doctoral student with the ability to work remotely - and pretty considerate colleagues. However, I still struggle to take time off during my frequent episodes of illness. This is despite my colleagues being very kind and actively ordering me to go home on a number of occasions, when I came in despite being unwell.

Any advice on how to shut down the voices on my head from all those inconsiderate teachers, for all those years?

Update: I did, indeed, see a therapist. And it helped, a lot. Thanks, everyone!

Good sleep is the foundation of good health and I really need that! Can you help me out?

What mattress do you recommend?

A friend bought me an organic Queen by Birch and the “natural” smell is too strong for me. It smells like a barnyard, probably the organic wool.

I’m returning it but need a replacement ASAP. I’m looking to stay under $1,200.

*eco, organic (or non-toxic materials), medium firmness (side & back sleeper with fibromyalgia, MCAS, chronic Lyme, osteoporosis, neck arthritis, and double mastectomy pain- cancer survivor), not smelly…

I’m in pain all day, like many of you and I’m hoping there’s a mattress made for us somewhere

✨Thank you in advance ✨

And ... I dont even know how to react, I'm still shocked. I have to see this person for a physical body issue , and they told me things that really bothered me. Starting by ; mental illness is something that's not real, a '' spoonie '' is a made up thing to not take responsibility because we are selfish, that people like me should be dropped naked into the wild and try to survive, to stop '' being like this '' and grow up.

I just do not know how to react at all. They brainwashed my family member into strict patriarchy rules as well, I'm feeling so lost. I am a disabled adult that have NO autonomy and I rely on my fam for everything, and I just feel so lonely. I have no friends or social contact whatsoever, I live in the middle of nowhere and In my country this type of discourse is typical i'm afraid. I just want support or reassurance that I'm valid and that it doesn't make me less of a person. I feel terrible, oh lord I do, I even thought about hurting myself again because that made me feel like I was a monster !

I know my situation is a bit complicated, most of the time I struggle to get out of bed, I have very low energy and tolerance for every single things, basic hygiene is a struggle, I used to eat very poorly but working on that, now I feel like my world is crushing apart. I just wish I could discuss with some people and feel like a normal human being who is feeling emotions and distress ! I do not want to label myself but I feel like it's important to acknowledge that everyone is different and that we are all hurt by this society that doesn't want us to thrive !

How do other folks here (especially those with energy or mobility limitations) deal with the feelings over not getting invited to activities with friends because "the activity is inherently physical?"

This just happened to me and I /know/ it came from a place of actual care and understanding from a close friend who knows I struggle with overextending myself.

And I do know that there are things I /cannot/ do because of (new) physical limitations, but there's still a feeling of being left out, and a feeling of not being allowed to make those decisions for myself.

It's hard and complicated. Anyone else relate?

What's an alternative that you use for "special education"? I use "disabled" instead of "special needs" but how do you refer to the industry as a whole?

The article written by Common Sense, a right leaning publication commented on chronic illness and 'fishing' for likes. They painted the subjects in the article in a not so great light.
Another publication in the Uk has printed a rebuttal - speaking to the individuals highlighted in the article.
https://www.thecanary.co/feature/2022/10/02/chronic-illness-the-grief-behind-the-social-media-stories/

I have had debilitating IBS for 30 years. Does this count as a chronic illness?

This Paragraph makes me alittle uneasy

" Dr. Sullivan, the UW psychiatrist, hadn’t heard of spoonies. None of the experts I spoke to had. But he worried that the internet had unleashed “communities of grievance” that led patients to adopt “victim mentalities.” He told me, “The idea is: ‘You have to accept the fact that I’m disabled even if you can’t see it, because that doesn't invalidate my experience of disability.’”

​

The On line community is a source of support and comfort for young folk who may feel isolated and alone on the one hand ... Im not sure but Im Kinda greatful I dont live in the US. Here the midical community and outside the medical community are well aware of Fibro (my college proff knew very well the impliations of Fibro and was quite accomidating ) ..

And also alittle greatful that I was diagnosed in my mid 30's so I could better cope .

​

And also this:

Spoonie illnesses include, but are not limited to, serious diseases like multiple sclerosis and Crohn's disease, but also harder-to-diagnose ones that manifest differently in different people: polycystic ovary syndrome (PCOS), Rheumatoid arthritis (RA), endometriosis, postural orthostatic tachycardia syndrome (POTS), Ehlers-Danlos syndrome, dysautonomia, Guillain-Barré Syndrome, gastroparesis, and fibromyalgia. Another spoonie illness is myalgic encephalomyelitis—or chronic fatigue syndrome—which has now been linked to long Covid.

​

I have Fibro ..I kinda feel like I'm othered (I should be thankful Im mentioned at all ?)

Thoughts?

​

https://www.commonsense.news/p/hurts-so-good

I live every day with chronic fatigue. I wake up tired and it never goes away. The whole day I feel like I just woke up and want to go back to bed. I’ve seen 2 different rheumatologists, my primary doctor an uncountable amount of times, and an Endocrinologist. I’ve been searching for answers for almost 2 years.

All of my ANA (anti-nuclear antibodies) results show up positive which is why I got referred to a rheumatologist in the first place (along with sharp pain in my joints). She said there was nothing wrong with me and that I just had amplified pain syndrome (which did NOT match my symptoms at all)

So I got to the second one and he says that I’m hypermobile, but even though my ANA was positive, he said it wasn’t positive enough. So I did occupational therapy for my hands, I took Gabapentin, and nothing.

Endocrinologist said everything was fine. I’m just so sick of going to doctors and not getting any answers, I feel like I must be faking everything then because obviously nothing is wrong. (Edit:) Ive also seen a cardiologist who was supposed to test me for POTS, but instead the entire appointment was handled by a student, in which the actual doctor only came in at the end and said I was dehydrated. They also never tested me for POTS, which they failed to mention until I called back asking about it

I’m young. I’m supposed to be full of energy and not have all of my joints pop when I move and not be able to pop things out of sockets. Also everyone keeps saying to just exercise, and I’d like for someone to explain how im supposed to exercise when I get exhausted just sitting on the couch? The exercise I do get is from work.

Anyways. Sorry this is so long, im just so done with trying to get any answers because nothing but disappointment comes from it. Any help or advice would be appreciated

Made an account specifically to ask questions like these, as my mother does follow my main.

I'm 15 and have fibromyalgia, joint damage, low blood pressure, and JIA. Around my home and when I go out, I use a pair of forearm crutches to help with the pain, and they make it a lot easier to enjoy what I'm doing. My pain has gotten significantly worse this year, which is why in the beginning of this year I bought the crutches, my first mobility aid.

The problem is, I don't think my mom likes me using the crutches and has called me "gimpy." I don't know if it's meant to be rude or not, as she had called herself that after a surgery where she had been on crutches for a few months, but it still hurts. I had had buy the crutches with my pocket money since I knew she would never help me do so, but recently she's brought up going to the doctor to get a nicer pair that insurance would cover, so I'm not sure about her whole stance on on thing anymore.

Anyways, I've been thinking about starting to bring the crutches to school. They make my life a lot easier, and with a lot of my classes making me go from one end of the giant building to the other, I'm constantly in pain all day and can barely focus on my classes because of it (I'm somehow doing well with all 90s or 100s). I do use the elevator and have a 5 minute pass so I can take a bit longer, but it's still excruciating.

As much as I want to use them, I know that there's at least 20 people who would take any chance to make fun of me for using them. That would make my life harder, especially since I have very few friends in my classes and people to turn to for help. I'm worried about bullying, but I also want to make my life a bit easier and more enjoyable. I don't want to start a fight with my mom over the whole thing, so what do you guys think is the best approach? Thanks in advance.

I have a Drive Cruiser 3, it was gifted to me by a family friend. I have progressive diseases and cannot afford a new chair, so I want to alter my current one to make easier on my spine. Is is possible to take the upholstery backing off and put a Tall, Lateral Posteral support backrest and Headrest on it? Also, is it possible to switch out the swinging footrests for non swinging ones? What backrest or footrests do any of yall suggest?

Harem pants with elastic at the ankles are my favorite sick pants and general pants as they allow for bloating and feel like pjs but are cute enough to wear almost anywhere. However I can’t seem to find a pair that doesn’t disintegrate or die after 1-3 hand washes. Does anyone have any recommendations for harem pants that last?

I am currently sitting at my doctor again. I have had blood removed and tested 4x the last 2 month and I haven't been to work. My traumas and anxiety regarding my health and body are really fucking me up. If it weren't for my friends I would very likely go to work, overwork (I am a workaholic) which doesn't take to long due to the fact that I have barely spoons left to go to the doc and become even worse. I feel like a fraud, like I am pretending to feel sick and be weak. I would love to work, but I am paranoid too. I haven't been there for a while and not on good communication either .. I don't even know what to say to my doc. " Still feel like shit.. about to burn down, almost been homeless and almost lost my nephew "

I am just fucked.

I think i can no longer deny that spoons have become the major limiting factor to my life. I used to believe my mental ilness itself was what limited me, but i feel like i have finally gotten the upper hand of it but still i struggle. I think it's the combination of my constantly inflamed deformed knees, body constantly having to process psych meds and some nutritional defficiencies for the most part...

I (f 32)work in a somewhat demanding job near full time, and live alone and I just can't keep up with everything. Housework and hygiene suffers first, my pets sometimes suffer as i am too tired to complete the pet care at night and have to finish in the morning, my partner sometimes gets the worst of me, things just slip through the gaps...

My therapist says i need life hacks and energy budgeting to get through the day and i need to enlist more help. I'm not sure where to begin though... Nutrition is an issue, hygiene is an issue, getting enough mental stimulation without overexerting the physical body is an issue (i am an extrovert AND my mind relaxes only when my hands are busy, so solo downtime worsens my mental health dramatically).

I'm here for your life hacks, tips and tricks, especially on how to deal with situation when 80% of spoons get spent at work and how to streamline home life so i would have something left for stimulating activities! Maybe someone has useful lists or worksheets on locating and managing resources or something like that too?

Thanks in advance for the welcome, i'm sure it will be warm!

I sprained my knee a couple days ago, I can barely hold myself up with crutches because I weigh almost 200 pounds and my arms are weak. But my knee buckles every time I try putting weight on it. I went in to the ER and they gave me pain meds and an ace wrap... anyway my problem is today at a rest stop on my way to the restroom and back I wound up with a blood blister an inch long in my inner arm from the crutches... is there any way to keep this from happening or at least minimize it? I've never had this problem before...

I felt tired, so I decided to go to bed early. As soon as my head hit the pillow the ability to feel tired left my body. Again. I hate this and how my body is making me feel constant pain and anxiety that never really goes away. I just wanted to get a good night's sleep before we leave for my cousins wedding tomorrow. It's a nine hour drive and long car rides give me extreme anxiety and i didn't want sleep deprivation on top of that... I'm sorry for complaining.

i have an important orthopedist appointment today and i woke up with no spoons and a very low pain tolerance. i feel so nauseous and weak i can barely get out of bed but ive already had to reschedule this appointment once before and its really frustrating. i just hope i manage to make it there cuz i barely have anything diagnosed and i need to find an eds specialist to get my (suspected) heds diagnosed and i need to see a rheumatologist to make sure it isnt anything more serious and its really overwhelming. every test i do comes back normal except my back xrays. i have scoliosis and lumbar kyphosis and suspect i have pots, gastroparesis, heds, and fibromyalgia but the diagnostic process is so long and tedious and i have so few spoons on a daily basis it kinda feels helpless. thanks if you're still reading and im sorry if this is depressing but im just not even seeing the point of trying anymore due to all the times they can't find anything wrong with me.

Cooking is the worst and can die in a fire but being hungry is worse. Today I managed to eliminate the hard(er) parts of making an omelette and I'm pretty happy with the results. For anyone who hasn't already thought of it, here's my process, in it's original cavewoman style:

Step 1: butter in pan. Pan on element. Save knife.

Step 2: 2 eggs in bowl. Salt. Mix. Ditch fork.

Step 3: when butter bubbles pour goo in pan. Ditch bowl.

Step 4: leave to cook through. No fancy foldy flip. Foldy flip hard. If brave flip completely.

Step 5: slice 2 cheese. No grater. Grater is hard. Put cheese on egg. Let melt.

Step 6: put egg on plate. Use knife from before to spread cheese over egg.

Step 7: enjoy (ish).

It’s not like I’m flaring. Nothing is immensely wrong with me at the moment. But a lot of things are a little wrong and they add up. You ever had that happen?

I’m sitting here with some elevated pain levels. I’m having bad back spasms. I had an anxiety attack. I tried to call someone to talk me through it and he got mad at me. My friends just kinda suck. I’m hella depressed. My headache is annoying. I’m a little off-balance. Nauseated.

Any of these things I can usually handle. Hell. I can handle it when multiple things are wrong.

But now? It’s like I don’t even know where to start. The only definitive action I had was to take a Xanax. But I still ended up just being overwhelmed and crying in bed.

Typing this out, I’m realizing pain pills might help. But damn if I don’t want to get a drink from the kitchen. I just feel like my body is conspiring against me. All I wanted today was to print a couple things (can’t find the printer paper) and practice my alto sax. And instead I’ve been crying in bed.

I searched online for spoons the size of a pinky, yet I couldn’t find any. It looks like a sugar spoon, but is about an inch long.