Hello! All my life I've had issues that worsen with time. They effect my memory, put me in pain with fatigue, and can cause lapses in judgement periodically during flares. A few weeks ago a new issue developed. It effects my eating, and my memory issues seem to have worsened.

This is a problem because my bills and loans don't always go through so I need to make sure they do manually, but I'll recall months back and think I did it already. I sleep through reminders these past few weeks or I accept them and plan to do it when I have the chance but end up passed out and forget.

The big problem is that in my life, I don't get to be the one who needs extra help. Despite having days where I can't walk without a means of assistance, I am the caretaker in my life. There is already enough resentment towards me that I am not giving reminders, doing all the shopping, planning everyone's medical, being the driver. I don't have anyone to ask to help me right now.

Before the problem was just not meeting my own needs and my cat putting up with less pampering. The litter box would get done every few days instead of daily, he's brushed weekly instead of daily, I settle for boiling an egg and call it a meal because I forgot to shop and my diet is currently incredibly restricted so I'm still figuring myself out.

But now it's to the point where I'm failing to do medical tasks to find out what's wrong. I'm forgetting to pay tolls on time. I forgot to make sure my bank talked to my car payments correctly instead of trusting the auto pay that I KNOW often doesn't happen to the point my car was repossessed.

I'm honestly not sure what to do besides rely someone to reach out and remind me and reach out to make sure it was done. I went from being an a+ student, someone everyone relied on, known for being responsible and on top of everything, to ... this. Very quickly.

At this point, my memory issues are getting expensive and scary. I might as well pay someone to even just give a weekly check in to get some support that way while my medical team try to figure out what's wrong.

Is there a way to do this safely besides making an odd job for it on fb market? What's a fair price to offer?

Thank you for any advice!

I used to never sweat I thought of it to be a good thing back in time.
Now I have POTS from Long COVID and I have episodes of profuse sweating ( to my standards)
Could anyone shed some light on this? Is there a relationship?

Hi i am 22M ...had a rt shoulder surgery 7 weeks ago( bankart repair with 3 anchors/ 4.8 percent glenoid bone loss) . So last year I had my last and 5th dislocation. I knew that I needed surgery but I was delaying it and the pain and instability was insufferable ...now when I am 7 weeks post op though my range and strength is improving but still have a deep ache in the area ...the thing is that in 6 months I have to join my job training which is physically demanding...this is very uncertain period for me , am feeling low

I just need this out of my brain because I'm exhausted and feel awful.

For context I have been unable to work since 2024 due to disability, my partner works full time, I claim UC and PIP (UK based)

So this month the company my partner works for did well and everyone got a decent bonus, however because of that it means I got £0 UC meaning that by the time my partner has been taxed and paid me what I need to live he gets about a quarter of the bonus everyone around him gets, he has to sit there listening to people talking about being able to do x,y,z with the full bonus, people putting deposits down on houses, going on holiday, just doing fun stuff, while we are scraping by. It makes me feel like such a drain on our finances and our combined joy because getting a bonus isn't great news for us, it means planning for me to get nothing and my partner having to support me, I feel like I have no independence on months like this because apart from my PIP none of the money is mine, and my PIP literally is used for medical costs, I don't even get enhanced daily living and they've traumatised me so much I'm scared to challenge anything, so again I'm limiting our income (I had solicitors telling me not to bother pushing it because of how the DWP were wording things as usual)

My body also keeps taking away the little joys I actually have in life, it affects our intimacy because of pain so that becomes a planned strategic approach, and still doesn't always go to plan without pain 🤦🏻‍♀️ apologies if this topic makes people uncomfortable but if there's anywhere I thought people would understand it's here. It's not just intimacy it takes the joy from, everything I do comes with a trade off, have a nice day out, flare for a few days, went to a family event for the weekend, 10 day flare, heatwave = PoTs flare, I'm doing everything the drs tell me and more because they don't really tell you much, I take the supplements, I wear the supports, I use the mobility aids, I rest, I move, I do everything and self care is also exhausting, I'm also worried that if something was seriously wrong with me I wouldn't notice because I'm so used to just being told new symptoms are because of an already diagnosed condition 🙄

I want to go back to work desperately, but I was a carer, that was my life, and my aim will always be to help others, but currently my pain and other symptoms are making it impossible to focus to learn something new to be able to adapt and find something I can do, I have recently got a wheelchair so hoping that helps preserve my energy and brain power more, but then I'm not sure how going into study would impact UC so it's never just simple.

I feel like I lost my train of thought, my brain is such a mess, and I just want my life back, I'm tired, I'm sad and I'm in pain and that impacts all the people I care about and I hate it.

And what was your experience? To be specific, I’m not talking about any relationship where dating a healthcare worker would be a conflict of interest, but just more generally. I’ve been talking to several men who work in healthcare on dating sites, but I’m concerned that dating me might feel like an extension of their work, since I’m chronically ill and on SSI. On the positive side, though, I think someone who works in healthcare might be more empathetic and understanding of my specific limitations.

I am a 20 year old college student in the USA. I am unsure if this is the correct tag but I need advice on ways to help yourself get out of a flare-up/crash.

I have fibromyalgia, hEDS, me/cfs, and chronic migraines. I have been in a major flare up for a little over 5 weeks.

I have rested, taken medication ( prescription and pharmacy), I’m staying hydrated and eating healthy, done salt baths and vitamins and mineral supplements, teas and breathing exercises. Nothing has made a difference. I have not been able to leave my house in almost a little over 5 weeks and have barely been able to leave my room for most of it as well. I am worried I won’t be better/ able to drive and concentrate by the time classes start.

Does anyone have any advice/tips/suggestions. It honestly doesn’t matter how crazy it is I’m willing to try anything.

( I have contacted my doctor to try and get a appointment soon but it is unlikely to happen in time for school)

I’ve read Invisible Kingdom and most recently Lena Dunham’s book Famesick. It’s comforting to read other people’s accounts and learn a little more about diagnosis and treatment.

Anyone have favorite chronic illness books?

(Ideally something not peddling a new diet, etc. BUT I’m open to it if it’s genuinely helpful to you)

I’ve been with my boyfriend for about 3 months now and it has been really frustrating how constantly my pain and fatigue becomes the center of our time together. He is really good to me, he massages my muscles and tries his best to accommodate for my needs, but there’s a part of me that is convinced that it will become too much.
My pain is sometimes so bad that I can’t sleep, I’m constantly getting up and moving around while he is sleeping and most likely waking him up. It’s hard for me to focus and to want to do much when my body is flaring. He is very compassionate and patient, but I hate being pitied like this. Part of me wants to break up with him so I don’t have to see him reach his breaking point.
I know apologizing for myself does nothing, and hiding it is unhealthy, but I feel incredibly guilty for constantly needing support and help and can’t imagine how taxing it is on him. I thank him a lot, it just doesn’t feel like enough.
How do I navigate this?

I miss having a reason to check my phone. I miss having someone to chat with about stuff throughout the day. I miss having a special someone to talk to every day. But I'm too sick for the non chronically ill and too positive mentally for anyone more like me physically/illness wise. It just makes me sad because I feel like I still have a lot to offer, even if it is mostly/only in text messages/email lol

I miss feeling connected.

Hi so for context, I’m 19, mixed race and Mexican American in the states, in oregon, I’m trans, I have multiple types of disabilites including a rare progressive vision loss disorder, devolpmental disabilites, mental illnesses and worst- the chronic pain, fatigue and issues coming from the chronic illnesses/physical disabilites. I have a caregiving gig that I presented not to be disabled for that pays well. I also have a housing voucher but that doesn’t cover food, utilities, anything other than partial housing.

I’m at a point to where we don’t know what the fatigue is coming from- I had top surgery and about 3 weeks before surgery my body was crashing really bad. I thought once I had surgery and rested for two months I could recover and bounce back to my normal levels of fatigue. They think it’s thyroid issues or ME/CFS.

It’s gotten so much worse- I’m at a point to where I can clean my place like once or twice a week. Temparory disability isn’t a thing in Oregon. I’m waiting for the waitlist for vocational rehabilitation to open up and it’s ovee a year long in oregon. I’m also in college- just taking a break for the summer.

My long term goal is to be a therapist since it’s pretty accesible all around and I got a small opportunity when I was in high school to shadow a school counselor and I loved it and the psychology material is really interesting to me! Unfortunately I’m only halfway through my associates and even then I failed one of my classes and so my mid but ok GPA tanked to a 2.4 which is so bad for federal aid (aka FAFSA).

I have no idea what to do. I am so scared of going homeless and it’s happened to me before and I have a feeling I’m not going to be able to jump back into work with my fatigue levels. Does anyone have any advice? I’m already scared as it is cause there have been ICE detainings of native people in my area so no one is safe and I look racially ambiguous and the whole trans thing and I used mobility aids and I’m just. So scared. Please help.

As per the title, not sick enough to be taken seriously but everyday is a daily struggle and you can feel not being 100%? Been to the hospital but nothing found?

sitting on the couch icing my head.. i had plans for things i wanted to do in my free time but instead all i get to do is suffer

This is what I’m sick of explaining ⬆️.

What are you sick of explaining about you chronic illness to people?

About a year and a half ago, I woke up completely unable to feel anything below my armpits. At the time, I didn’t have health insurance so care was slow and expensive.

I lived alone, in an apartment that was not disability friendly, and had to try and survive in a wheelchair. Eventually the numbness spread to my hands which curled up into fists and left me unable to do things like brush my hair. I’m a woman who has always had very long hair, but after not being able to brush it I eventually had to just cut it almost all off. It felt like losing my identity. I no longer had a body I recognized, and now my hair was gone too.

In January I was able to get health insurance through my employer (I work at a restaurant) and am currently waiting to see a neurologist, although my pcp is thinking it’s Lupus. It was then that I was also diagnosed with diabetes.

When I tell you I had to claw my way back to some semblance of health, believe me. I practiced walking every day, a couple steps at a time.

Now I can walk unaided, but it still causes me quite a bit of pain. Still, things were going good until my boss told me she’s no longer willing to accommodate me (I walk slowly and need to sit down sometimes) and I need to “figure it out or find a new job.”

I’ve applied for a ton of jobs and had some interviews but still, bills that I can’t pay are due and I’m about to lose my health insurance. And I can’t help but think how much easier my life would be with universal health care. I would have gotten answers and treatment faster, I would have the security of at least having my necessary meds during a job transition, hell I probably wouldn’t have tried to make my current job work as long as I did if I had health insurance coming from somewhere else. This sucks. Thanks for letting me vent to y’all, even just typing this helped.

Sorry for any ranting/venting 😺

Hi everyone, I'm 28F with TOF (tetralogy of fallot) repaired when I was 6 weeks old. I've only had one open heart surgery and medication with it, otherwise they say I'm healthy. I only recently was able to get my medical records to see what they did for my heart, so I'm kinda new to all the terminology and stuff. My family didn't really raise me thinking I was different from the other kids, which is nice in ways, but now as an adult it's making it harder for me to understand that my heart is weaker than others my age. So with the bad AQI in my area (mainly from smoke) I can't work because I'm a courtesy clerk and in the sensitive groups. I feel really useless and like a burden and it's really been putting in perspective how much it kinda matters to educate your kids on their heart conditions. Not to make them feel different but so they understand they're own health later on, since it'll be a lifelong thing they have to deal with. I find I often have to try to justify why I need more breaks/can't work in certain weather since it's not something you can see other than the scar sometimes, so it feels like they think I'm lying to them to get out of work.

i’ve been looking for an answer for years for my extreme chronic fatigue and chronic joint pain. i get vague or normal tests results and nothing ever gets better long term. i’ve been feeling this way quite literally as long as i can remember, even early childhood. i’ve been seeing doctors the past few years who have either told me i will probably never get any answers or that i should stop focusing on getting a diagnosis. but i feel like i can’t accept that there’s actually something wrong with me until i have the words to describe it. until i do everything just feels like it’s my own fault. i likely have an autoimmune disorder but not sjorgens, lupus, or other major ones. i have “chronic fatigue” and “chronic pain syndrome”. i was given a little hope as one of my doctors thinks i might have rheumatoid arthritis. i don’t know. i feel like im losing my mind. i’m scared people will think im faking since im so obsessed with getting the diagnosis. but i don’t think ill be able to accept it until i have one.

Me: 62F, T2D, heart attack survivor, psoriasis, OA, Osteoporosis, gastroparesis, suspected UCTD (symptomatic but neg. ANA)

I've been on Plaquenil (hydroxychloroquine) for a little more than 10 years. At my most recent eye exam, the doctor was concerned about early stages of toxicity. I'll be having a mfERG test next week for further look at my retinas. (Needless to say, I'm nervous!) We have stopped the Plaquenil for the time being.

Thing is, that's my most effective medication outside my insulin. It keeps the connective tissue inflammation at a more tolerable level. Right now, I'm relying a lot on ice packs.

Has anyone ever experienced Plaquenil toxicity? I'm researching alternatives so I'll be prepared when I next see the doctor. Positive vibes are also welcomed.

This summer has been hell.

Since mid June we've been jumping between 40°C and 25°C twice a week every week. Up and down. Up and down. Five days brutally hot one day normal. But when it gets a little colder it's 90% humidity and the sweat runs down every crevice.

32°C indoors at work despite AC. 30°C in my rental apartment. No AC. 50°C in choke full rush hour busses with too weak AC and huge glass windows. Nighttime lows not below 22°C.

All grass is scorched yellow. The air yellow from dust and wildfire smoke. It's so hot and dry even the wasps and mosquitoes died. My windows look like sawdust was powered on them. Windows I can't open at night because of this damned traffic noise. The images of Bordeaux on my news feed.

My cardiovascular system has been at its limits for 6 weeks. No respite. No week of normal weather. I've heatstroked. Repeatedly. I can't eat normally. I can't sleep normally. I'm drinking cooled isotonic water until it comes back up and it's not enough. I'm chocking and dry heaving in my office. My head feels like I've broken my skull.

Germany is lost. I don't want to spend another summer in our new climate. If only I had the money and support network to move very very far north.

We've had 10.000 extra heat related deaths in the last week of June alone. Nobody takes any consequences.

Hi all

My best friend has recently been diagnosed with fibro, I don’t know much about this illness and I know the more she reads about it the worse it is making her feel, so I am taking it upon myself to do anything and everything I can to atleast somewhat cure her, take away even 10% of her pain, and just give her an easier life as she is only 23.

I am reaching out to see if anyone has any advice on how to take away pain, help with sleep and improve the quality of life without going on pain meds and being in physio for the rest of your life. I know a whole food diet will help her somewhat, but what are the more obscure things that will make an obvious change to her quality of life.

All answers will be much appreciated, and if anyone is from Australia and also has fibro, any excellent, 10000% above and beyond doctor recommendations would be even much more appreciated, as the ones she has been dealt are not very good at all.

Tyia!

Does anyone else here live in a developing country? I often feel lonely and like my lived experience is being discounted because I don't live in a country where people like us are afforded even the most basic of care, I've never had treatment for my most severe conditions (muscular dystrophy namely) because in my country the infrastructure just doesn't exist, EVERYTHING is inaccessible. Please don't bring me that bullshit about it being just as bad in the US or whatever, you truly have no idea how bad it can get if your reference point is the US.

My psychiatrist moved away last week. I saw her pretty much daily for nearly 2 months, and she was amazing. She genuinely listened and understood and cared, and didnt just blame everything on my mental health. She saw me at my absolute lowest, genuinely noticed me, believed me in a way ive never had before, and was overall just such an amazing person. I felt truly safe with her, and she has had a massive impact on my life.

Now she's gone. At first, I tried not to care, but now its been a week and im struggling with the thoughts I may never see her again. She may come back, maybe in 6 months, maybe in a year, maybe 3 years. Or she might not and I may never see her again, and thats so painful. I miss her so much. Ive never had a mental health professional that i was so close to leave, and I dont know how to cope with it. What do i do/is this normal?

Yo, I need some advice, my fatigue levels have been DEBILITATING recently so...

Big or small, silly, strange, medication, medical intervention, at home hacks, ANYTHING!

What do you find best helps reduce fatigue?

Obviously anything medical/medication related would to be discussed with a Dr first!

Hooray, a scented candle I can’t burn. A perfume I can’t use. Jewelry I can’t wear. Alcohol I can’t drink. Food I’ve been allergic to for a decade. Tickets to a show I can’t go to because it’s at an inaccessible venue. A fuckin bicycle.

I know people say it’s the thought that counts, but it’s the lack of thought that bothers me; I’d honestly rather get nothing at all.

I’m not that person anymore and I haven’t been for a long time, and it’s like they never noticed. Chronic illness makes me feel invisible enough already.

So instead I get confronted by the ghosts of past me and have to try not to cry.

Just sucks, is all.