u/lunafaced

How do you determine when it is appropriate to use your wheelchair and how often?

The obvious answer would be listening to your body when it tells you, but i have a problem with that.

I have a horrific habit if turning reddit posts into full on essays so im gonna try not to do that but I have a cheap transport chair and following the advice of my old pt "making sure I don't become dependant on it" has resulted in me being significantly less mobile, going with the lightest support options dont work for me anymore after about a year of doing so.

I have me/cfs and elhers danlos and the whole family of things that come with both. Right now i would consider my ME between mild and moderate. However its been a struggle, my "push-crash" pattern has a lot to do with a little something I like to call 🫧cortisol maxxing🫧. It feels terrible but im trying to be positive about it. Basically what happens, is i can see the signs and symptoms on my body of a flare coming up and not sure what it is if its adrenaline or what but I start feeling almost manic like I cant feel whats going on in my body but I know its there and im exhausted but I cant stop or sit still. After a few days I flare and feel really bad and i can feel my body screaming to stop and i just cannot sit with it for long enough to recover and the cycle starts over and then after a few rounds of that I have major crashes that alter my baseline.

Its been really difficult to accurately assess where I am, and all I know is that im not getting any better. So I have been trialing using my wheelchair more often even for things that I could just get up and walk for. But my brain is still filled with heavily internalized stigma around deconditioning and all that. Physically I dont need to use it full time and just transfer to other seats and stuff because I can still technically walk, but my body also cant recover from like anything end every month i havs these monumental crashes because I cant seem to slow down when my body tells me to and even when i tell mtself to.

Is anyone who is ambulatory use their chair full time? What led to the decision? How are we building trust in bodies that cant recover from or sit with pain? I really wanted to try and follow drs orders to a t so that they would take me seriously but there ks a very clear correlation to my decline and how hard i was trying to avoid higher support mobility aids. Whats yalls advice? I do know I am not in a properly fitted or suitable chair, and I am working on figuring out how to get one. I just switched care teams so I think irs gonna be awhile before i can get a referral for that, but i am still looking at various resources.

//TW WEIGHT LOSS// synopsis: person with strongly suspected gastroparesis is facing barriers in nutrition because of symptoms and is asking for help in creating a soft/liquid diet to ease symptoms and prevent further weight loss while waiting on medical evaluation.

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Hi, please remove if this is an issue, I do not currently have a diagnosis. However, the suspicion is extremely strong. This post will be very long because i want to provide all of the details that are important in figuring this whole thing out. I have all of the hallmark symptoms, as well as Ehlers Danlos syndrome, and my old doctor did advise I advocate to be tested for it with my new providers as it seemed extremely likely.

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Unfortunately, I had several appointments with new providers and very little time to discuss everything and my gastrointestinal concerns have been brushed off before I can get into the severity of it because its either not their specialty or im out of time because i had to spend the entire appointment explaining my exsisting diagnoses before being able to express my concerns.

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I was able to snag a GI referral from my OBGYN. That was back in April, and the GI office cannot see me until late September. I am on the cancelation list, but was not considered urgent. Due to the above issue.

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I have repeated episodes of severe constipation and random blood sugar irregularities, early fullness that lasts ages, bloating after literally a few sips of water the bloating that comws with eating is painful, causes cramping in all 4 abdominal regions, episodes of random nausea, i could go on.

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It has gotten more frequent since summer of last year when I developed ME/CFS. And since march of this year, it has become pretty constant. I dont really have flares anymore where food and water doesnt cause pain, and no periods where I can have BM regularly. In the last 3 months I've lost about 10 pounds, despite pushing and maintaining for as much food as possible.

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im really short, and was a preimie (which for some reason still matters?) So usually its about a 70/30 split of doctors that will pay no mind to me being underweight despite it clearly being symptomatic, and doctors that will blame anything and everything on my weight and refuse to acknowledge other symptoms needing to he addressed. But, I bring this up, because I understand the difference between being just being small and being malnourished as I have been both, and I strongly feel my weight loss is not normal, okay, or healthy for me and my situation.

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As you can imagine im kind of shitting myself (figuratively only, unfortunately.) over the fact that i still have months before i can see a specialist. And in my experience with other specialties so far, the referral doesnt always guarantee care. So i could be looming at longer if i have to seek out multiple providers before i get considered to be tested for anything outside of being annoying and psychological issues.

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I apologize that I havent gotten to the actual question yet, i felt context was necessary. My actual question is what are some things i can do diet wise to improve, or at the very least, delay worsening nutrituon?

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The levels of inflammation in my gut were tested back in January and were extremely high. I imagine this is due to the combination of food sitting long periods before being passed, with mast cell activation and chronic inflammatory response Syndrome. I tested positive for the genetic makeup and inflammation level requirements, and I also have been unable to live in a fully mold/biotoxin free environment, so i am still in active exposure.

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Based on all that I am looking into a liquid diet of some kind, to allow for easier passage. Im going to be cut off of my mast cell stabilizer meds for about a month before I can be seen by a GI as well as meet with the provider that will *hopefully* resume my prescription. So the already vicious cycle of gut irritation is about to get much worse. And I assume that if i am not passing the solids I eat, and am not breaking them down inti the nutrients I need, then it will contribute to the inflammation, further making literally everything worse. I am unsure how to get adequate nutrition without contributing to this cycle and becoming worse off.

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I do understand it could be risky, and I dont want to do it wrong, and end up making things worse. I was hoping you guys could give me some recommendations for the ways that liquid diets have worked for you, or any other alternatives you think may help out in the waiting period before i can get this handled by a medical professional.

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I am not terribly well off financially, but I have a blender and a very supportive parent who is helping me stay fed throughout all this. I just want to stop the weight-loss and try to give my system some help. I am already sick in a bunch of other ways, and not having adequate nutrients to support the constant need for recovery is not an option. I need to be able to pass foods without being reliant on laxatives, I dont respond to them particularly well. In the past, I have tried laxatives and magnesium to ease constipation and Ive gone through multiple cycles of being unable to go completely without multiple doses, and the movement being so terribly uncomfortable that i end up shaky and dehydrated and very depleted, which didnt feel safe to do more than once a week. The only thing i have been able to take daily to ease bowel movements and promote more than once a week are my mast cell medications, and the difference is still minimal, as well as the issue with running out before the new provider can reevaluate me, i was advised my diagnosis for MCAS may be considered invalid due to it coming from a naturopath.

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Thank you much for reading, and for any advice or support you can give. I do apologize for how long it is, there is just so much going on, and i have been unable to identify ant specific trigger foods because EVERYTHING hurts. I am at a loss, and I feel like this is all I can do, and I want to make sure I am doing it right. I obviously dont know for sure if its gastroparesis, but whatever it is, has to be kept calm until September unless i can convince someone to update my referral and allow me to take an urgent spot.

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Thank you again for your help and I am wishing you a calm and peaceful night.

I feel like none if my family really understands too much, they are all very indoor and homebody type people, though i know they try.

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Before my illness caught up to me (untreated Ehlers danlos that suddenly took a turn for the worse after viral infection in my 20s gang 💀) I was suuuuper active. I wasnt a sports person at all, but I didnt have a car or license because I GENUINELY loved walking and using public transit. I used to live in such a beautiful area with great public transit access. Where I live now is beautiful too, but access is a bit harder in my area, the system is not a streamlined. But thats beside the point.

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I would walk everywhere, id start everyday at 5am and go for a nice walk, get my coffee, come home, clock into work, and at the end of the work day id clock out, go on another walk, sometimes id be out for hours just enjoying the outside time. On weekends id take shuttles and trains to towns id never been to before, hiking, farmers market shopping, etc. I just was always outdoors. I had some home troubles at the time but i did love my home and those i lived with so much. But I was always outside because I just genuinely loved where I lived. My apartment was cozy (albeit full of mold, but I didnt know that lol) my neighborhood was cozy, I had everything I needed within walking distance and the views were just so beautiful. Even during the start (and middle tbh) of my decline, I was outside and happily wandering around as much as i could possibly be.

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But its gotten so bad that I had to move bqck home in with my parents. And for starters, im incredibly grateful for that. And I hate speaking on how difficult it is being here because of cPTSD, I feel I'm coming across as ungrateful for the fact that despite everything that has happened under this roof, its a roof over my head that im not paying for. my mom is very troubled, but its not really her fault, and she has always been extremely loving and welcoming, and I am very thankful she wanted me back at home and that i have as good of a relationship with her as i do. I only bring it up because I think it could probably explain some of the intensity to my restlessness.

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I am so incredibly tired of being stuck inside. And its frustrating, because not only can I not really get out on my own anymore, but even if i can, it hits me so hard. I have ME/CFS, and so I have to be very careful about not triggering PEM too much, but it is actually destroying my soul just sitting in the house all day, typically in a dark room. I miss being outside, i miss going to cafes, i miss grocery shopping, simply wandering the neighborhoods and counting how many outdoor kitties i see, etc. I never really had a lot of friends, and the majority of the time I spent outside I was by myself. But my wheelchair situation in less than fantastic. Its a transport chair, so its extremely heavy, and when taken on outside terrain, its extremely difficult to self propel for more than like 3 minutes. So in order to go anywhere, I need to be transported there, and if im traveling outside I need someone to push. And even inside, if its for too long I wear out pretty quickly. So even though i like to be alone, I now cannot go anywhere without help. Im very fortunate to live somewhere with a medical transport system for folks like me, but if i were to go anywhere outside of an appointment, it would be quite costly to order lyfts or taxis, and I dont have income anymore.

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My mom works full time, and I certainly did not get my genetic health issues from nowhere. She let's me know when shes got errands to run, and shes always offering to have me come with using whatever aid I need so I can get some time out, which im Incredibly grateful for, but lately ive been feeling so unwell that I just haven't made it out with her. And I want her days off to be restful, and for her to spend them doing what she wants, shes working very hard on her garden right now, so i really dont want to bug her the second I feel up to it and ask her to drive me somewhere, or take me to the park, or take me to the store, or this or that. So I've reached a point where i leave the house maybe once every 7-8 days for a medical appointment, and thats it. I'm going a little bananas. And I have no one else to call up and beg them to take me out when my mom is busy or resting. And the fact that i even need to do that makes me feel awful.

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"Hey friend, I know times are tough right now, but i need you to spend a bunch of gas driving me around, and I also need you to push my wheelchair and only do activities that are accessible to me because that is the only way i can hang out" feels like a one way ticket to being called too much, or a bad friend. And I know this is inpart due to internalized ablism, and a true friend wouldn't fuss about the physical abilities of a loved one, but I spend far too much time on social media, and I see sooooo much stuff about how if you dont do xyz, or have a friendship that is materialistically 50/50 its a bad friendship and I immediately take it to heart, which, is fully my bad and I am gonna be talkinging about that in therapy.

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I've kind of lost my train of thought, so if you've made it this far, i apologize. I just want to go out. Going to the park, the store, the water, the freaking gas station or corner store for a little treat even. My biggest helper with depression and mental health struggles has always been to just touch some grass. Go for a walk, or something. And nkw that im stuck inside so much i feel like such a burden for needing help. And I struggle to ask for things even when i could. I feel so lonely, and I have tried making internet friendships and what not but its just not the same as how full I felt getting to enjoy the sun or the rain or the moonlight.

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That being said, im extremely grateful for my mom. She does a lot to try and make me more comfortable, and I feel so terrible that its all on her when she needs rest too.

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Hi all. I was wanting to hear some suggestions from folks if possible about ways to generate income.

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Im not looking for anything huge to make a living off of atm. Im very privileged to have a roof over my head and food put in my mouth by my family now that im no longer able to work. However, as we all know, even medicaid, is expensive. I need lyfts for when med transit falls through, costs for medications not covered by insurance bc they come from a compound pharmacy, certain hygiene supplies to accommodate my struggles, dietary items since my stomach situation is a bit different than the others in my household, etc. And in all honesty, just being able to help out with some bills and be any percentage more self sufficient than I currently am would be nice.

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I do want to say, i am planning on selling artwork. Its been a lifelong dream of mine to be an artist full time. but if you dont have money to fund that process, or any audience, which i have neither of currently, it takes a bit longer. So im still researching the most cost effective way to make and sell prints, as well as frame my originals, keep up with supplies and all that.

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Im hoping to find something that can be done kind of on my own accord, as my issues kind of change day to day, and I dont always react predictably to things. Ive heard various things about audio transcription, so im considering looking into that, but I thought i would just come on and see if any one already had a system or tools that they use to bring in a bit of change. It sounds a wee bit silly, but im also vaguely good at reading tarot, and have considered doing donation based readings. But I need more practice.

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Alternatively, if there are any artists here, I would love to hear your tips for selling and marketing on top of being full time medical admin for a cranky client (myself). I quite struggle with the "influencer" aspect of having to market artwork on social media, and I hate AI with a burning passion.

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Thank you !

Do you really feel pleasure?

Do you really ever give yourself time to become aroused?

Do you understand, that the moment a hand touches your lower back,

the safety plan Has been deployed?

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You are wet,

you are panting,

you are squirming, screaming and straining.

You are seeing stars, jumping and twitching.

the orgasm feels as though a stake has been driven through your lower abdomen.

Do you know what it is you are doing?

Do you know why every time the other takes a breath

you have to swallow a hurl of insults and tears?

Why it is that a caress of the skin feels like

a million little needles branding you with the responsibility of doing it again.

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You do not know what pleasure is.

You do not know what arousal is.

An orgasm to you, is expelling a foreign object from your body.

The painful gasp inwards after a resusitation.

Watching yourself from a distance lean in to be kissed until you cannot breathe.

Until your lungs have squeezed themselves shut.

Until you are free diving with no oxygen.

No warming equipment,

no gps.

No camera.

Just adrenaline.

Just that you are the prettiest boy in the world.

And as soon as it’s over,

as soon as they stop trying to push themselves in,

The Water will begin to rush in floods.

You will lay there in bed decomposing from the inside out,

mold from moisture growing on your skin.

You will turn pretty jewel shades of purple blue and green.

You will start to slip apart, each finger and toe degloving itself.

And you will wake up in the morning

and you will wonder why you cannot get clean

In the bath.

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Hi, its the middle of the night and idk what im doing but I came across this sub.

I am 23, and I like men my age and older. I am disabled and majorly housebound, and at this point 60% bedbound. I cant walk for more than a few minutes, light and sound sensitive, and too weak to push my wheelchair. As you can imagine my options for dating irl are slim. So I have been considering a long distance/online situation. Here are some pros and cons about me:

Pros:

- I am an artist and I love to make things. I also love stationary. If/when trust is built, you will likely be in for lots of letters and little gifts

- I am kind of like a walking pharmacy of medical advice gained through lived experience. I may be able to recommend solutions for minor aches and pains.

- I have a cat, and shes awesome.

- I enjoy listening to things about other people and the stories they have to tell. Sometimes I am a bit slow to process, but I enjoy it nonetheless.

- I am pretty bad at chess if you want to beat someone in a game

-I dislike generative AI.

Cons:

- the obvious, I have bad medical problems.

-I have a horrendous relationship history. The common denominator in all of them is that I was involved

- im not good for sexual gratification.

- I don't work anymore so I dont have much money.

- I cant really travel

- sometimes my text messages are actually unreadable, I have given up on spell checking unless its professional.

- I get uncomfortable with people easily

- I have read my list of cons and still decided to post

I think thats all for now

Hi, ive been praying on my own again the last few nights and if its okay I just wanted to ask for some support. I am really struggling with medical issues and the fact that the Healthcare system is doing me more harm than good even though I need it to survive. Because of this ive been incredibly lonely. I know i am not alone because I have the universe with me at all times. But if anyone could pray for me to get a little bit of relief I would be very grateful. I will be praying for myself before bed as well, and a big thank you to anyone who had me in their thoughts. I want the best for everyone, and I hope everyone has a peaceful night.

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Tldr: progressing chronic illness is, progressing (ME, EDS, and comorbid friends). Need help/advice or comfort on figuring out when a caregiver is needed. Long post bc I usually give too much context. Tw for nutrition issues

Hi, I have ehlers danlos (and friends) which makes things difficult but after developing Myalgic Encephalomyelitis last year ive been on a steady decline. I moved back home, am out if work, and just got enrolled in medicaid. I am 23.

Ive been in hold with ride share services to set up my profile fkr an hour. My HR wont stay down and my pem fever has returned, even though im pretty calm (thank u rescue remedy.)

I washed my hair last night and it was hell. At this point i cannot deny that its getting to a point where the things I insisted I could do myself are crumbling.

Im not able to take care of my medical issues adequately anymore because i can't get out of bed. This includes eating and drinking.

I stay with my mom who is amazing and my best friend. But she works full time 5days a week from 6-2 in a nursing facility. Im home by myself for a large portion of the day and I didn't get my chronic illnesses from nowhere. So by the end of her day shes wiped out.

At what point do I start considering a caregiver or in home care? I need to eat and drink. I am not tube fed, and have to rely on my shotty ability to get up and feed myself. I have serious GI issues that already make food and water intake terrible at best but cannot be seen for them until September. Im still on hold with ride share as we speak and the longer I wait the longer I will pay. One phone call means hardly being able to get up and pee for the rest of the day.

My family is pretty low income, my parents are paying off so much debt that after bills they dont have much left, and my savings aren't enough to pay someone an actual wage. When did you decide it was time for in home help? How did you get it? Are there options for medicaid members?

I were an item of clothing, I think I'd be a beloved pair of second hand pajama pants. Preloved and ready to be worn again. That pair you are always happy to see when pulling out of the dryer, knowing you'll be wearing them again soon. Probably more than once before their next wash.

They are soft, comfortable, and fit you just right, the way a brand new pair don't quite. Their second handedness gives them a broken in feeling, like they know well how to hug a waist, well versed in draping over the leg.

You wonder why they were donated to begin with. Was it the faded colors? The growing hole in the crotch? Did they stop fitting? Or did the previous owner just not want them anymore? Maybe got a new pair? You dont know.

They work for you though. You sleep in them, run errands in them on rough days, you bring them on vacation with you no matter the climate. Its not like you talk about them much. Typically you wear cool thrifted sweaters and jeans, you boast to your friends about the price, or the brand you scored for cheap. You're well known for your style. Not your second hand "jammies" as you call them when talking to yourself.

You wouldnt hesitate to talk about them if somebody asked, but nobody really does. Theyre just pajama

pants. Worn and washed out fabric thats come full circle to being soft again. Some embarrassing holes here and there, but you'll fix them if they get too big.

Helloooo 22m (23 in about a week) looking for a friend to hopefully surpass more than a days worth of communication.

I struggle a lot socially I am sorry in advance.

Here are some things about me:

-located in the pnw

- gay and androgynous, please b okay with that

- love cats, and birds. Particularly herons and egrets.

-I paint and love textile crafts

- retired goth, at least dress wise.

-enthusiast of the same few cartoons I watched as a kid.

- I can kinda read tarot

I hope that is good!

I don't have a gender preferences, the only thing im picky about is just that you are in similar age group or older, and you are open minded.

Starting by saying I have a roof over my head and a loving mother and I am extremely grateful for that. I understand fully I have a privilege alot of others dont.

Im just frustrated because I lost my job, and I was on paid medical leave for 3 months.....and never got any payment. I owe money to cashapp bc I borrowed so I could keep my visible monitor and I have no way to pay that back. I have zero dollars. And im frustrated because my mom has stepped in to help pay for my phone bill and my insurance but shes also fucking broke 😭 she does not have thr financial means to support me and watching her suffer trying to figure it out makes me feel so guilty. Im no where near stable enough to work but I need to start looking for a job because I don't think she can keep up with this and neither of us can afford anything extra like my specific toiletries that work for my sensitivities bus fare so I can get myself to appointments or the one time a month i can make it to the community center for interaction with others. I hate being a burden on my family like this. But I have literally nothing to give back and nothing to give to myself because EVERYTHING costs money. And I cant even be a sugar baby bc i have no sugar to give if you catch my drift 🫩. This shit sucks and im so frustrated that I never got my leave benefits from the state because I had to move back home and now I dont even live in that state anymore. They make the process as difficult as possible so they dont bave to pay when that money could have given my family groceries for the week because what would have been used for that had to be spent on my insurance premiums. It feels like all my fault and I hate it. Its gotten so bad ive come out of witch retirement to do money spells and not even those have worked. I feel like im drowning in financial stress and trying to survive progessing illness at the same time I literally just want to die. I cant afford to get any worse but I cant afford getting better and my body isnt taking orders to stay put anymore. I have no trustworthy friends anymore the last one I had crossed some really serious boundaries last month while i was actively getting worse and I dont feel safe with them anymore. Im just venting at this point i know I have a lot to be grateful for still i just hate being such a burden to myself and everyone around me and outpatient care isnt moving fast enough but no one will admit me to a hospital because im not bad enough yet (though I beg to differ) so i just have no choice but to hope it doesn't get monumentally worse and I cant stop crying and having freakouts and its pouring more pressure on my brain i hate it so much and there is nothing I can do to make it easier on my family because I have no fucking money. I feel like they only thing I can do is die which wouldn't help them much either.

Edit: thanks so much for the advice guys!! Im so glad km not the only one that doesnt do too well with self reads. Im def gonna do some free reads for awhile and find my style and get some reviews :)

I wasnt really sure what to tag this as its kinda multiple things but i had some questions.

I have been thinking about doing tarot readings for folks. And possibly having a v small side buisness doing so, im not talking about making a living off it or anything, im talking about pay what you can maybe a few bucks here and there, trading readings or other goods. I dont wish to work for free but I dont wish to charge an arm and a leg for something like this.

But I kinda suck at tarot. Ive done a few readings on others, and it always seems to strike a chord or hit something that needed to be hit. But im a TERRIBLE reader when it comes to myself. And I dont wanna give anyone else a shit reading bc like the 2 or 3 ive done on others whose lives i had a better understanding of seemed to work okay. But I just have a much easier time reading others than myself. How should I proceed? I guess i want to explore whether or not my abilities to read others could be useful before I start "taking clients" i guess. Self reading tips are welcome too.

Completely unrelated question, im thinking of designing my own deck. If anyone's done so and been able to get it printed on a deck for them to use id love to hear how it was done:)

23m and became disabled last year after getting too many infections and putting a hidden genetic condition on blast. Developed post viral neuro-inflammation and its progressing. Outpatient care isnt moving fast enough but no doctor or hospital will admit me so im inching towards severe stages and/or death. Lost most friends that o had, only remainders keep me at a very far distance. The one that didn't got too close and crossed some very important boundaries that resulted in me not feeling safe with them and too much bodily stress that resulted in taking another step downwards in function. I am loosing the will to continue trying to survive, i have no intrest in taking my medications or attending appointments anymore. Nothing thats been done has improved my functionality or given me any ability to work or be independent or stop me from continuing to feel worse and worse. I started self harming again after being clean for 8 months. I feel privileged to have a roof over my head and a loving mom but I have no way to give back what I owe. I have lost hope that I will ever move forward or be in any less pain. I can hardly eat and the soonest I can be seen to address that is in 4 months. I keep hoping and praying for a miracle as my strength has proven to not be enough and its gone unanswered. Idk how to keep myself alive anymore

Folks with pretty severe skin sensitivity, what do you use if anything to help calm down discomfort?

I have MCAS and CIRS. I am horrendously itchy. Everywhere. And the sun is coming out and staying out. I sat outside yesterday with long sleeves, sunglasses AND and umbrella, but I need good spf recommendations, and if at all possible, recs for anything to help calm down irritation. Since the sun is out and im likely gonna end up burnt spf or not I thought about aloe gel but I was curious to see if that works for anyone or if there were any must haves to quell the constant irritation. I use a dove sensitive skin soap thats not scented and I have like a lot of it so its gonna be a min before I can get new soap but im also open to ideas on that. The dove one is ok but my skin is pretty unhappy still, on top of the itchiness im still breaking out in a lot of places. I use one of the vanicream cleansers for my face which has been okay, but im in the market to try some other options to see if theres anything better. I am on 2 mast cell stabilizers and a regular antihistamine and an as needed antihistamine (benadryl, would like to avoid if possible) but its still a fairly new regimine, some extra skin support couldn't hurt. If it helps at all I tend to have combonation/ skin on the drier side. Let me know ur must haves! TIA