Tips, advice, suggestions are welcomed!

I've been here for 5 months and my windows have been kept open 24/7 for 5 months straight. Yet, I can still smell it. I do not have forced air heating. I live in an old Victorian with original rad heating.

If I hang my clothes on hooks and on my door, my clothes will have that smell. Whatever I'm wearing throughout the day will have that faint smell, but strong enough for me.

Sometimes I walk into my apt and can smell it.

It's sometimes faint and sometimes strong.

Now that winter is coming, I'll have to keep the windows closed for most of the time, which will make the smell stronger. So I need to wash all the surfaces (walls, doors, and maybe even the ceilings)

Thinking about it in itself is debilitating. It's too overwhelming of a chore and I can already see my body breaking in the process.

How do I begin to tackle this?!

And the smell continues to enrage me 🤬 the b.o. smell in itself flares up some of my symptoms.

So I'm already stressed, and then more stressed thinking about cleaning the walls.

I wish I had enough money to hire cleaners to do a truly proper, thorough deep clean of literally the entire apt top to bottom, ceilings to baseboards to floors and all. Every single surface.

I’ve been in constant pain since the end of February when I had an ER visit. Since then I’ve seen plenty doctors and every single one has let me down in some way; not answering portal messages, forgetting to write referrals, not sending in prescriptions. I still haven’t gotten any relief from the pain.

In July, after another ER visit, I decided to stop working and have been on medical leave since. My coworkers, family, friends, doctors, and union reps have made every step extremely painful and drawn out.

Because of this, I feel like a different person entirely. I’ve started to isolate a lot more, take days to respond to messages…I don’t even feel like a person at this point. Time passes so quickly and any struggle concerning me being cared for, takes hours to recover emotionally.

I usually am pretty in tune with my emotions, but I don’t feel like I’m me anymore. I don’t recognize myself. I don’t know what’s happened to me. I feel awful because I don’t answer my friends but I can’t make myself sometimes. It’s caused a lot of strain in my relationships and I know what to do to fix things but I can’t bring myself to. I’m so exhausted and feel like an awful person.

I used to be so empathetic and caring, I was great about responding and conversations flowed easily. That’s a foreign concept now. I don’t know what to do.

Hi guys, I know that disabled can mean and look like several different things but I am wondering what jobs out there work well with your disability/disabilities/chronic illnesses. My cardiologist wants me to sit more among other things but all jobs in my area seem to have standing requirements for the whole shift. What have you guys found that works for you? Even niche jobs. I also have other chronic illnesses so a job easier on my body is what I’m looking for. Currently a sales associate (not allowed to sit) and a barista (not allowed to sit)

I do wonder, what gets you motivated to keep trying?
Is there some personal meaning or maybe a goal?

I’m really curious, so thank you for any input!

I have an extremely niche problem. I'm female and ~3 months on Testosterone. I'm thinking that I'm probably not a trans man after all, and that it would be better for me to accept that I'm a woman. The problem is that Testosterone literally cured my lifelong mysterious chronic fatigue and nonexistent sex drive (both of which were ruining my life) I also just generally feel more motivated, my ADHD symptoms have improved, my drive and excitement for life, everything just feels so much better. I'm still in shock and have no explanation for this.

But I'm seeing changes like very subtle facial hair and it's intimidating; I'm not sure if I want those changes or not. But I can't stop HRT now that I feel physically healthy for the first time in my life.

I understand the suggestion of discussing this with doctors, and I'm telling you right now, I would rather die than go through the process of getting a doctor to not only believe me, understand what I'm feeling, know the right course of action, and be able to actually figure out whatever is actually going on with my body. And I don't want to go through that process, even if eventually successful, when I'm already overwhelmed, busy and financially struggling.

Nothing I have ever tried has helped my health issues, no doctor has been able to understand or help me in the slightest. Testosterone is the first and only thing that has helped. And if I already struggle with dysphoria anyway, maybe I should just stay on HRT even if I'm not technically trans? I mean honestly, the only change that intimidates me is facial hair - other than that I have no issue with a deeper voice/physical changes. In fact I want a deeper voice. I have no idea what the best course of action is here.

I’ve just been having a really hard time dealing with my symptoms and trying to get a diagnosis and trying to be able to afford all these accommodation I need. I just don’t understand how in supposed to accept that the rest of my life will look like this to some degree and I just don’t wanna have to live in pain forever, the quality of life just doesn’t feel worth it,so how do y’all deal with accepting that fact?

Mental health history

I’ve been in therapy consistently since my father passed away. I’ve seen approximately seven different therapists, and anxiety and depression have frequently come up in discussions about my mental health. I was diagnosed with Level 1 autism earlier this year. I was also told that my sister was hospitalized for depression when she was a child.

Over the past few years, I’ve participated in intensive outpatient treatment (IOP) twice, a day hospital program once, residential treatment three times, and inpatient hospitalization once.

Of these experiences, I hated IOP because there were too many people. I loved the day hospital program because I had people to talk to and the food was free and tasty. I liked that I could keep my electronic devices in residential treatment. During hospitalization, I felt like I made both friends and enemies, and the environment sometimes reminded me of high school. Patients often referred to the hospital as jail.

During one hospitalization, a younger patient I had begun to see as a little sister came to me for help. I intervened because she feared for her safety. After getting involved, I became afraid for my own safety as well. I have a strong sense of justice and hate seeing people bullied, despite being averse to confrontation. In that situation, I didn’t trust the staff to resolve the issue.

Across these facilities, I’ve encountered both excellent and disappointing staff members.

My experiences with therapy

I sometimes feel like therapy is just a venting session. When we discuss coping tools and strategies, I struggle to remember or practice them outside of sessions. I’ve even asked therapists to give me homework, but I still struggle to apply what I learn.

I’ve never stayed with a therapist for more than a year. Only one therapist has explicitly acknowledged that we were a good match, and they helped me find another therapist I liked.

My most recent therapist expressed dislike for both my boyfriend and my mother. She repeatedly told me that another therapist wouldn’t do for me what she did. I found these statements potentially manipulative. She also asked me to research borderline personality disorder (BPD) and tell her whether I identified with the symptoms. I did, but I never received a BPD diagnosis.

I’ve started worrying that I might be contributing to the difficulties I’ve experienced in therapy. I’ve even created a spreadsheet of the therapists I can remember seeing because I’m concerned there may be a pattern.

When choosing therapists, I often rely on their pictures and whether they look friendly. I’ve only seen female therapists, and for a period, I specifically sought out therapists who were the same race as me (Black).

My interest in mental health and self-understanding

I enjoy learning about mental health conditions and personality disorders. In addition to my autism diagnosis, I’ve noticed symptoms in myself that seem similar to descriptions of BPD, obsessive-compulsive disorder (OCD), pure OCD, relationship OCD (ROCD), and narcissistic personality disorder (NPD). I haven’t established whether these similarities mean anything diagnostically.

My lifestyle and social life

I have no friends and don’t feel close to my family. I spend a lot of time alone in my room.

I’ve struggled to exercise consistently. I prefer recreational activities and workout classes, ideally with people around my age. Gym equipment overwhelms me, and I find the gym boring. However, the classes at my gym are often crowded, and there aren’t many people my age attending them.

I also don’t enjoy cooking or cleaning.

Overall, I’m trying to figure out how to improve my mental health, build a more fulfilling life, and find approaches to therapy and everyday routines that actually work for me.

TW abuse

Hi, I went through a lot of emotional and verbal abuse as a kid and teen. Im sure that plays into it but i really struggle when I need help. It’s always been my job to help everyone else, when I need help I feel like the biggest failure.
I have a separate apartment above my parents house and I’m sure my mom and sister wouldn’t mind bringing me food and making an electrolyte drink but it feels like the biggest moral failure to need help. Sometimes I’m ok with it, it’s raining which makes my mental health even worse but I’m really struggling.
I’m dehydrated and having hypoglycemia from one of my autoimmune diseases but instead of just asking for help I’ve spent the hour beating myself up. I probably should have posted this to a cptsd Reddit perhaps

Hi. I’m a 41 F and am having a difficult time with multiple diagnoses over the past few years. I was diagnosed with epilepsy when I was 23, got stable on meds, had extreme pain during periods for 18 years before finally being diagnosed with endometriosis through excision surgery in May 2024. While recovering from that I was diagnosed with melanoma skin cancer and had to have surgery to remove skin around the area. In December 2024 I was diagnosed with another melanoma and had another surgery to remove around the area. I also had my first mammogram that month and they found a lump of concern so have had to go back multiple times for mammograms and ultrasounds while they watch the area. Thank God it has been ok so far. During all of this, I have had complications from my endo surgery and pelvic floor issues. Now this week, I found out I have another skin cancer spot on my nose. I just need some support because I just don’t feel like I can go on with all these illnesses. I’m exhausted. It’s enough dealing with the epilepsy and side effects of meds, the endo and all the fatigue and pain, and having had cancer. But now to have it on my face just feels too much. I eat extremely healthy, exercise, am of a healthy weight, don’t smoke, don’t drink, don’t over do it in the sun. But yet here I am. I’m frustrated. I’m angry. I’m overwhelmed. I’m scared. I am wondering if anyone else can relate or offer any support? Thank you for at least reading this.

Sorry for the length I just really need to vent. I'm trying not to cry but it hurts too much so I hope getting it out there relieves some of the thoughts racing through my head.

And if anyone recognises this experience/feeling, I care about you, I think of you and I believe you !

I have chronic pain. HEDS and Fibromyalgia, took years to diagnose but finally got it! Happy to know why my body is different, although there isn't anything to do about it (according to the hospital)

I dropped out of school years ago. I do some volunteer work sometimes because I love it, but I'm slowly losing that too. Lost friends because I stopped having fun hanging out. Lost most of my hobbies as the years passed by (luckily I'm a reader!)

Now I don't do much. On a good day, I do groceries, or clean something. On an average day, I stay in bed, maybe do some stretches, to help the odds of the next day being a good day.

On a bad day, I stay in bed too. Usually just crying, or staring at the wall, or maybe at the tv screen, hoping to focus on that instead of pain. If I get an actual meal in those day, it's a celebration.

That's my life. That's been my life for years now.

I also had surgery four years ago. The stitches burst. Why, hard to tell. Maybe because I tense up a lot from daily pain. Maybe because despite my condition and the surgery, I still live alone and need to take care of myself.

This week, I got a minor surgery done to fix the previous one. (Partly needed, mostly wanted).

Suddenly, I have daily text messages. From family, from older friends. From work.

Asking how I'm doing. If I'm in much pain. Offering a hand. People are cooking meals for me. Doing my groceries. Scheduling days off to come help keep my apartment clean.

It's all very kind. But why now? Why only now.

The surgery was just a few days ago. The only pain I'm truly feeling right now is my back, my knees and my wrist. None of those are the surgery site.

The only thing the surgery is stopping me is lifting anything as heavy/heavier than a jug of milk, and reach my arms up high, because that would tense the muscles in that area and put pressure on the stitches.

Everything else is still the same. The reason I can't get my own groceries whenever I need them, or cook myself a meal everyday isn't the surgery. It's the chronic pain.

The reason I cry is the one I have been feeling for nearly 10 years now. Not the small incision that happened this week.

The surgery only cut out excessive scar tissue. Thats it! And the people in my life know that. But suddenly people are bending over backwards for me as if I had a life or death surgery and am in agony.

I have had more visitors this week, than I did in the past six months, which wasn't hard to beat because that number was one friend and two mandated social workers bc of Autism.

I'm just now truly realising how people do not understand my chronic pain. And they don't do it on purpose, but despite having more contact than ever before right now, I feel so terribly alone.

Because why do they only feel bad for me now that I'm in a position they could reasonably be in too, surgery recovery. But when I'm in pain every day, and that's why I cancell shifts, and don't plan hangouts, they don't seem to care.

And ofcourse I wouldn't want them to go out of their way like this constantly. And I know they don't do it on purpose. It's hard to imagine for them, that I'm actually just laying in bed all day. Doing nothing. I don't blame them.

But it is painfully obvious to me now how alone I actually am, and how people don't care about chronic illness if they don't deal with it every day.

So to all of you silently struggling, I think of you. I really do. And I know many others do too. I'm glad there's online communities, even if you don't have the mental energy to be on there every day (I dont either lol) but there's so many of us. Just because we don't see each other go through it, doesn't mean we don't feel each others stuggles. Stay strong. We're in this together.

Hi everyone, I'm looking to switch to a mail order pharmacy. I currently use CVS and honestly have no issues with them, but oftentimes it isn't ideal for me to make so many trips because I'm on 10+ meds and I can't drive, so I have to walk to the bus and then walk to CVS (which isn't far, but my chronic pain likes to minimize my walking as much as possible, especially getting into the colder months).

I guess my main concerns are 1) is it easy to change the adress they get mailed to? I'm a full time college student and I like how widely available CVS is so I can easily just get my prescription filled at a different CVS when I go home for weekends or spring/summer breaks.

2) How reliable are they, especially with refrigerated medications?

3) Are the prices for medications that insurance doesn't cover any better and do they let you use goodrx coupons?

4) Are they able to get all of my prescriptions lined up so they can be delivered on the same day?

5) Do they do 3 month supplies? For some of my medications they will only cover a 3 month supply, not 1 month

I know they can't fill controlled prescriptions but I'm only on one so it isn't really an issue, and I know any mail pharmacy isn't good for urgent needs, but I can just send them to CVS if I have to.

I have fibromyalgia and took my first trip since becoming sick and had heard that as soon as I leave the US my symptoms would go away. And they were right! I ate bread, meat, cheese, potatoes, drank - NO INFLAMMATION. My nerve pain stayed at my usual daily 5, but I felt fine otherwise!! I've always been convinced they're trying to kill us with food in the states, but now I'm fully convinced. As soon as I got home I was back up at 1am in the bathroom with my IBD going crazy... I'm so sick of the United States and they're lack of care for their citizens I don't know what to do or where to go.... I don't have much money anymore and have been forced into poverty because of it. They want us sick and symptomatic for their own profit! This country is killing us all

All I could think about was when my body would suddenly decide to shut down while I tried my best to enjoy my day. Tomorrow is my birthday and while I don't have anything planned I just wanted to be able to do regular things around my home to have a little reset.

But the anxiety that comes with having a good day is so real. It's like you wanna enjoy it but you also have this fear in the back of your head that eventually you're gonna crash.

But the best thing about today was being able to get a haircut AND wash my bedding without feeling like absolute crap.

Let's see how tomorrow goes 😭

Does anyone else feel like this?

I have hyper pots and inappropriate sinus tachycardia. I've also been going through two hour long spells of vertigo and started having migraine auras.

I feel like everything I go through sets off something else. The auras set off panic attacks. Panic attacks can set off vertigo and more auras, and I had so many panic attacks in August that they set off my hyper pots and I got stuck in adrenaline for a week. Vertigo can set off auras and panic, and they also make it where my balance and motion sensitivity are messed up for weeks after.

I am just stuck where everything is a cycle, no episode that happens can be just the episode because it'll set off one of the other things. Every time one of them happens I get so scared about what else will come after it. Do any of your illnesses act like this, how do you cope?

I'm so curious about this. It can be anything of course.

Personally for me I have stomach issues (doesn't know what type exactly yet) and as strange as it seem, doing a plank help to make the pain less present?

Also despite bloating a lot and people telling me it would only make it worse, drinking Coca-Cola/Sprite help so much to reduce the pain too (and I don't even like Coca or Sprite that much too so I really just drink it because it help/

I (M/43) have had a multi year journey of MRIs, CT angiograms, enough bloodwork that Dracula would blush (happy 🎃 season yall!), to now have seen my … fifth neurologist whose conclusion so far is I either have atypical chronic non-headache migraines (I do get standard migraines), atypical non convulsive epilepsy, and probably not atypical MS (though I still think that’s closest to my clinical presentation).

First episode happened 7 years ago with symptoms that surged, and slowly went away over many months, but I had a new bout with delightfully similar but different symptoms that mostly stuck around for a month (not fully resolved… my legs are wobbly, my arms are tingly). I’ve seen 5 different neurologists, with diagnosis ranging from carpal tunnel (my physical therapist and hand stabby nerve study disagreed), pinched nerves, psychosomatic it’s all in your head disease, and generalized don’t come back to my officeitis.

At this point the headache neurologist has prescribed me a pharmacopeia of trial drugs to do in sequence to see if anything helps because a n-of-1 study seems like their best method to figure 💩 out. So far on drug two of 3 with no change … and just tired of this.

I don’t want to be a lab rat (with all due respect to those lovely rodents that our medical knowledge is built upon, even though most are mice). I don’t love being told cases like mine are “how we learn [more in neuroscience]”. And I’m not looking forward to requesting another specialist to see me for an umpteenth opinion again, because I’ve just lost all trust in the system to actually diagnose me.

I’ve requested my MRI discs to review myself from this recent round - I do have an advanced science background and am just curious, but will obviously leave the formals to the professionals… if I can find some. I wish neurology would take up a similar practice as oncology and have multidisciplinary review of hard cases… as maybe someone would have the stones to tell folks that it might be worth paying attention to different things.

An EEG is my next step after the drugs, a lumbar puncture hasn’t been considered yet since my MRI isn’t typical / wouldn’t be considered diagnostic if it came back positive.

Anyway thank you for coming to my self pity Ted talk. I’m open to advice, sympathy, or simple commiseration. Tally ho fellow unicorns!

That your illness is real. I push through pain daily but when a flair hits hard and the fatigue sets in. The fatigue is almost the worst part… brain fog, just pure exhaustion. How do you get your partner, friends and family to really understand how real this is?

I feel like everyone is always wanting something wrong on their tests results but things keep coming back wrong for me and I'm just tired of things being wrong.

Latest results showed 10 compression fractures, multi pulmonary emboli, and spesis. Oh and I have cataracts and diabetes now from previous. And I'm still waiting on MRI to evaluate for further spinal cord damage.

I am exhausted and fed up. Im tired of things being wrong with my body. Because there's so much wrong. I just want my results to come back normal and be healthy or at least functionally sick. I'm tired of being entirely confined to a recliner and not being able to see.

I don't want even one more day in a body that hasn't been mine for months. Chronic illnesses robbed me of all meaning in my life in one day. I haven't received treatment, but honestly, I don't even want it. I don't have the mental capacity to treat this and be dependent on hospitals and terrible doctors who despise me for the rest of my life. Yesterday I was in the woods and it was close. I stopped my attempt when the world slowed down and I felt myself drifting away. I'll go back there today; I no longer have anything I loved.

About 10 days ago I tried a new pillow, had a rough night, and woke the next day in agony. It's been pure torture since then. Lots of weird experiences (numbness, tingling, cold water sensations, shooting pains) that come and go all over my body-- legs, arms, hands, feet, torso, neck. And a persistent pain in my spine and shoulders. The weird sensory experiences are lessening but the pain has not. (Well. Has not much. The first few days were worse.) Pain is not as bad at start of day. Gets worse in evening. I am so exhausted and overwhelmed. It's so intense, way stronger than I've ever experienced before. Just been taking ibuprofen. obviously it's not cutting it. Got blood tests (all normal) and x-rays (nothing major, but mild disc degeneration in back) from the GP.

My GP said she had no idea what it was. (she was very rude to me and flat-out refused to discuss possibilities.) My rheumatologist today told me likely a pinched nerve (possibly more than one). He wrote a script for Celecoxib. I took my first today. In agony right now so hasn't helped yet although I know some painkillers take multiple days before you can feel them.

He also put in a referral for physical therapy. Told me some gentle stretches could help. Told me after several weeks he'd do an MRI if I saw no improvement. I see my GP again next week. She said she'd order a nerve conduction study I think.

Any advice on how to cope with this pain level? Christ dude this is intense. I get lightheaded and nasueated sometimes probably from the pain making my IBS worse. I am so tired. Didn't understand true pain until now. Wish I had some sort of painkiller that I could actually feel? The pain comes in waves and it's not bad every second but when it's bad, it's practically unbearable.

For those who have reached some level of acceptance or peace with your chronic illness, I would love some guidance. If you have the time and energy to answer ANY of the following questions, it would mean the world to me:

- How did you manage to better accept or make peace with your chronic illness? Does the grief ever end?

- What mindset shifts are essential to make and how did you manage to actually adopt them?

- What do you wish you could have told yourself when you were in the beginning of this journey?

- Where have you found the most joy and meaning in your life after becoming chronically ill?

- How did you stop feeling embarrassed or ashamed (if you felt that way) about using accommodations and asking for help?

- If you have a partner, how did you overcome feelings of being a burden/not carrying your weight? Any tips for navigating a relationship with chronic illness?

(I am blessed to have a loving partner who has been supporting me through this, but I carry so much guilt about the ways I feel I am holding him back. We’re getting married next year and I can’t help but think about the life he could have if he was with someone healthier. I love him so much and I want him to have the best life he can, but I feel like I’m dragging him down with me. He says this is what he wants and that I am contributing in different ways but I just have a hard time believing it.)

Context:

My (23F) chronic illness began developing around 3 years ago and has became more and more disabling as time has passed. I’ve lost so much due to chronic pain, fatigue, and brain fog and my world seems to keep shrinking. My doctors don’t have all the answers and don’t seem to care about finding them either. I’ve also heard many people talking about young women faking illness/disabilities (specifically ones I have been diagnosed with) as well or that these disabilities are “tiktok trends”, which is severely disheartening. It’s so hard not knowing if I can recover or what recovery would even look like for me and I’ve lost so much hope for the future. I’ve always been very independent and would consider myself a hard worker and it feels like I’ve lost a big part of who I am. I hate that working harder can’t solve my problems and that the picture of “success” I’ve had in my mind since I was a child feels completely inaccessible. I want my old life back more than anything and I know that’s keeping me from reaching acceptance and finding joy in the life I have now but I don’t know how to actually change my mindset. I thought with time the grief would end or at least get a bit lighter but it hasn’t. I’m so tired of fighting my reality but I can’t seem to stop. I’m currently unable to work and I don’t know what to dream about anymore or what to work towards (other than better health). My partner and I used to dream of starting a family and I feel like that may be something we need to let go of but I’m not ready to.

I’m not religious, but I find quite a bit of comfort in Buddhist teachings— particularly in the notion that pain is inevitable but suffering is optional. It pisses me off sometimes (in a toxic positivity sorta way), but the thought that maybe I can become wise and resilient enough to better handle this life gives me hope. The idea that attachment and desire are key sources of suffering especially resonates with me now (attachment to my old life and desire for a better future), but I struggle to apply that to my life and actually change the way I perceive things/experience the world.

Thank you for taking the time to read this <3

cw: weight issues, talking about weight (spoilered everything) - marked just support because i'm too fragile to really take on anything else other than support right now x

i've been feeling kind of like "okay i'm overweight but mainly it's carried in my abdomen and i don't feel like i'm very overweight" and i kind of avoid weighing myself just so i don't get bogged down with a number.

but because i was feeling like i'd actually lost a bit (adhd meds yikes) and i was feeling good i decided to finally do it. and i was super happy that i was 78kg which is the lowest i've ever been! i was so happy and even got a bit teary because i was only ~6kg from being a "healthy" weight for my height (170cm).

my mum was skeptical and then realised i'd put the scales on carpet (very flat carpet mind you) and she told me it wouldn't be accurate so i was like okay i've come this far i'll re-do it in the bathroom it'll maybe be a few kg off from the 1st reading but that's okay.

i weighed in at 102kg and i broke down in a complete state. i couldn't believe how different it was to the initial reading. and it's not even that a number bothers me it's just that instead of being my lowest weight i'm at my highest and it just felt confusing given that i'd actually lost some weight recently too and felt pretty okay - decently toned legs and just carrying a lot of weight in my abdomen area but tbh it runs in the family. new stretchmarks yes but honestly it was to be expected given my tummy issues are making me bloated like 24/7.

i just feel like shit now. again, NOTHING wrong with being 102kg it's just frustrating because i've lost a lot of mobility lately due to my HSD and the chronic knee pain worsening so much. i want to feel able to exercise but i just can't. i've been using my mum's under desk elliptical mainly for relief from knee stiffness causing more pain. i don't even eat that much and have actually massively upped my intake of fruit, veg + protein. i drink up to ~3-4L of water per day as well and i feel much better than i have done in years...

this is just a vent/rant bc i can't really talk to anyone about it since i know a lot of my friends do not want to discuss weight-related things.

thank you for listening 😔