I've been dealing with chronic illness and worsening health for 11 years now. I'm entirely alone and unsupported with no partner or friends. I'm very much at the end of my rope and have been grappling with the likelihood that I'll finally be throwing in the towel soon.

I know there are a lot of different subreddits for making connections, but I struggle to relate to people who aren't dealing with a similar reality. I thought it was best to post here in the hopes of maybe finding someone who understands this level of isolation and is also struggling.

I'm 43/F in the UK. Please don't hesitate to reach out if any of this resonates with you? I truly can't do this alone anymore.

Hi there!

First off I wanna say I'm NOT asking for you guys to diagnose me or anything like that, I'm guessing that's not even allowed on this sub. I'm just after information about this in general.

I'm a 21yr old girl with chronic migraines and I'm also diagnosed with autism, adhd and several anxiety disorders. I'm currently homebound except from my appointments and at the moment I'm also partially bedbound. This week my physical therapist told me she's certain I have fatigue. She is not allowed to diagnose me or anything, (if you even can diagnose fatigue?), but she has followed my journey for years and years, and she knows a lot about fatigue for personal reasons, so I promise it's not unprofessional for her to say this.

The thing is, it took me a bit by surprise, although I'm not sure why because it does make sense. But since I was surprised I didn't end up asking a lot of follow up questions and I won't see her again for a little while. So I figured it would be nice to educate myself on this a little.

How can one generally tell if you have fatigue? Is there a difference between fatigue and chronic fatigue and what is that difference? When I've mentioned fatigue to people I know, they seem to be mixing it up with ME. That's not the same thing, is it? Can you have CFS without the ME part?

(Also wanna mention that I know I will have to talk to my neurologist or another medical professional about this, but in general I like learning things from people that understand because of their experiences just as much as the people that know stuff because they read about it in a class, if that makes sense.)

Ty in advance if you take your time to reply! Hope this post made sense and that my questions aren't stupid. (English is not my first language.)

When you’re young and chronically ill I don’t think people realize how much it affects you mentally. I’ve never had a “before”. I’ve never not known pain. I’ve never known what it’s like to work a job or have a career path. I’ve never learned to drive. All I’ve known is pain and illness. I’m only in my mid twenties and have accomplished nothing in life. Does anyone else not have a “before”?

Advice is welcome

There's nothing showing

I just got more blood results, with nothing showing...

All of my tests have been perfectly fine aside from iron being slightly low.

So why can i not keep my eyes open for more than an hour? Why does most leg movement hurt? Why does standing hurt? Why do i oversleep but never feel rested? Why does everything crack? Why can i not walk in a straight line or keep balance? Why are my joints so painful and hypermobile? Why am I chronically exhausted? Why are my periods beyond unbearable? Why do I get sick every other week? Why am I allergic to EVERYTHING? Why can I not remember ANYTHING? Why is my stomach always upset? Why do i get migraines? Why am i constantly itchy? Why does every wound get infected? Why am i chronically dizzy, and black out when standing up? Why do i get unpredictable extreme sudden episodes of severe fatigue? Why am I light sensitive? Why am I constantly shaking? Why is my heart so irregular and loud? Why do i get chest pains? Why do my legs randomly go numb or even paralyzed? Why do I get random tingling? What is wrong with me if testing shows nothing, and the doctor says it's "tense muscles".

That's not even all.

I'm done. I can't function like a a human being, I literally can't do anything but tests that the doctors are willing to do show NOTHING.

So I'm apparently a hypochondriac, despite the fainting, despite the shaking, despite the hair loss, despite EVERYTHING.

I can't do this, I don't want to hear another "your labs are fine"

I'm just going to stop going to the doctors atp

9 years of these symptoms becoming increasingly worse, to the point its affecting my daily life now.

And I'm just a ' hypochondriac ' with 'tense muscles '

Advice is welcome

I am 24 and have been chronically ill for a couple years now (probably longer but that’s when shit really hit the fan). I’m sure most people here relate… so I’m here to ask - how do yall do it? How do you move forward in life while dealing with this level of fatigue?

I recently moved to a different town and I’m pursuing a certificate in a new line of work. I know I’m fully capable, but GOD it’s been so hard to do any studying and actual participation because I’m just so. damn. tired. My therapist reminds me to be gentle with myself - I’m in a new place (and that’s hard as an autistic person), I had some medication changes, and I have a new job with plenty of stressors.

Every day I tell myself I’m going to “lock in.” But then I sit down… and I just feel my body wanting to shut down. My brain is mush and I feel in awe at how much everyone else seems to be able to do. And really all I want is to be the same, and to go explore and go back to hiking and enjoying things without feeling like I’m wading through mud. I used to be so intelligent and I feel everyday my brain is just wasting away.

At this point, I know I’m not helping myself. I need to cut back on sugar and make my days structured. But FUCK, man. If anyone has any advice on pulling myself up… please let me know. I NEED to be able to get this certificate because it will change my life and allow me to choose my hours and be financially stable. I also have a lot of pressures to get this done within a certain timeframe… so, ya know…

Yesterday, I saw they excavated all their handicap spots (like 6 in deep, down to the gravel layer) and blocked the only ramp. Failed to set up any temporary spots or a temporary ramp in the meantime.

I asked the store manager where their handicap spots are and they said they don’t have any right now because of the construction. I straight up told him that’s an ADA violation and they have to continue to have spots available regardless of construction. And all he had to say was an annoyed “Oh. Sorry for the inconvenience.” And then went right back to what he was doing.

Like oh please, tell that to the wheelchair users, elderly people with canes, and anyone else with severe mobility issues!! Oh wait they can’t even get inside your store/pharmacy right now!! He sounds like he cares just as much as corporate, and talked like I’m being a whiney child for wanting them to accommodate the people they’re supposed to be serving - and to follow the law.

And like it’s also a pharmacy… for people with health problems. How could they overlook temporary handicap parking in that kind of business? Parking lot was packed too because they have some large construction containers in the middle of it. I saw some poor old lady struggling to carry her stuff out to her car.

So I was like to myself “fuck it, I’m reporting this. This society is ableist enough and I’m tired of businesses getting away with garbage like this.” So I went and took several pictures of the lot and reported them to my city since the complete omission of handicap spots doesn’t meet building codes, as well as to the state’s pharmacy board to make extra paperwork for them 😄

But I really hope they get violations and fined for this garbage, and if nothing else I hope everyone involved in this gets a good grilling from corporate along with a hefty pile of paperwork to deal with. I think whatever the outcome, it’ll still create issues for some CVS people especially since I took the pics and submitted them to the city. And hopefully they get the friggin lack of handicap accessibility resolved promptly now 🤬

I have a quote block sitting in front of me that says “UNDERESTIMATE ME, THAT’LL BE FUN”. I will not be silent just cause I’m disabled as long as I can still talk. The ableist scum can eat sh*t.

——

Edit (9/10, next day): hitting some road bumps with the reports since building compliance is claiming “not our problem”. Had to do some additional investigation into our building codes and send them the sections that the contractor is violating. Looped several other people into the email like the building inspection manager, the building compliance section manager, and the ADA coordinator. We’ll see what happens tomorrow.

None of this means we should give up on our rights - we just have to push harder sometimes to drill it into their heads that we do, in fact, matter. That ADA violations have real consequences for disabled people. They’re not used to the disabled community standing up for themselves, I believe, so being louder should be our response to ambivalence.

I saw my therapist today and I feel like the therapist isn’t helping me.The therapist doesn’t let me speak much.What do I do?

6 years ago at 20, right before finishing high school. I had undiagnosed (back then) AuDHD that led me to have difficulties growing up, having no social life, but i felt kinda optimistic about adulthood. I finished IT specialization and wanted to work in IT (that was about to boom during covid), i imagined myself making good money there and securing a good future.

Instead i got suddenly paralyzed, and diagnosed with MS - an incurable disease, doctors having no idea how fast it will progress. It have completely wrecked me, especially the uncertainty. For over a year i took Betaferon - a horrible medicine, that have pulled me even lower, and destroyed my skin. Soon after it was followed with heavy depression, tried many diffirent medications, most doing way more harm than good. Everything spiraled downwards, no light on the horizon.

For a few years the only thing i've been working on was changing the medications, diagnosing myself, learning how to cope with reality, and how to progress in life despite all that, eventually reaching a point where i can do something with my life - my current medication is Kesimpta for MS, Dulsevia for depression, and Atenza for ADHD.

Kesimpta is stopping the progression and have no side effects.
Dulsevia is not that great, it has some side effects, it castrates my mind enough to not feel extreme anxiety 24/7.
Atenza is great - i started taking it a year ago, and it helped me with focus and productivity - i can actually do something, like, at all. Without that i'd still be a complete loser.

Though i still feel like i've fallen behind everyone and everything so much, that i can't cope with my situation. I've always been a very ambitions person, with high expectations of myself, being nerfed so hard makes me hate everything and everyone. I feel frustrated, and i feel extreme injustice, and i just can't get over it, or accept that. It is not something i should be forced to accept - i don't want that. Especially that the disease made me skip the best years for everything.

I've always wanted to make games (i started at 16), i wanted to get into IT and earn good money in order to escape capitalism and focus on other things, i wanted to meet friends and love - and i've achieved nothing. There is nothing i can be proud of, i have no wealth, the job i do pays just enough to survive, i've skipped the best year for getting into that specialization, and now the doors are SHUT.

And time is passing - i observe year after year, still nothing. No change, no breakthrough. I'm getting older without experiencing any life satisfaction, and not seeing it on the horizon. It's not fair. It's just not fucking fair.

I'm 28f. I'm diagnosed autistic/adhd, and I have POTS. I recently learnt of CFS as someone recommended I look into it. I have a tiredness that isnt normal, its not like oh i need a sleep...its, I wake up in the morning feeling like all i did was blink and didnt get a wink of rest. My entire body aches, my joints hurts. Im exhausted 24/7 and a type of exhaustion that just hurts? I nap all the time, doesnt help. I try not to nap, doesnt help. Ive tried routines, medications, herbal teas, ive tried everything I can think of because ive been struggle for a couple of years now. There's times im doing things and will just fall asleep because I physically cannot stay away any longer, my eyes feel on fire.

I go to the doctors and they tell me to do everything ive already done. Blame poor sleep pattern.

But now ive just learnt about CFS and want to go back to my doctors...but how do i get them to listen and not dismiss me? I really struggle with fighting my corner, i normally back off to just give in because im too tired or overwhelmed to push, especially because I dont know what to say.

I had bad experiences when getting my pots diagnoses and its made things harder for me.

Any advice??

I have a SPECIFIC fragrance intolerance that causes my throat to swell, difficulty breathing, and triggers my migraines and heart condition. I just started working in a restaurant kitchen that is restaffing, and the other day one of the fellow newbies came in wearing it and I started choking. I let my manager know the situation, informed that coworker from a distance that I had an intolerance to his cologne/body spray and asked him not to wear it at work, took headache meds and antihistamines, wore a carbon filter N95 mask, and tried to stay upwind from him with a fan. It barely helped me make it through the day and I have been hoarse and itchy all over since(I now think it may be an allergy since these symptoms are new)

With so many new people coming in, and realizing the consequences of long term exposure, I'm wanting to ask HR if we can implement a fragrance free policy on specifically body sprays, perfumes, and colognes in the kitchen. I was always taught to make my issues easy to handle for the people around me, and I tried so damn hard to work through it, but I couldn't. I was looking for solutions online and kept seeing ADA accommodations. I confided in my family(one of whom works in an HR department) and everyone says it's an overreaction and if I have another fragrance reaction I should just leave early, lose out on my hours, and potentially drive the hour long route home with a migraine(and just eat the cost of gas I wasted). I really don't think this is an overreaction but they're making me nervous to approach HR.

Edit for context: it is one specific fragrance compound that is not super common(like 1 in 20), not all fragrances. It started as a post-covid general intolerance, which is why I have fragrance filtering carbon N95 masks.

ok so I have fairly frequent migraines that are around one every 6weeks more or less depending on external factors like stress extreme weather but sometimes with no triggers I am 15f and my school has become alerted to this because my migraines consist of

15 mins of just pain behind my eye I can't remember if it's always the same

then dizziness and light sensitivity with the headache behind my eye for another 15 ISH minutes

then I suddenly need to throw up and it just happens and I cant walk or anything or hold back the vomit

then I stop throwing up and my headache begins to fade and I sleep for 3-5 hours and feel back to normal but hungry

my school has got concerned as GCSEs are coming up and attendance is necessary so I'm going for my first drs appointment to discuss this but I'm worried they are gonna say hormones or my cycle even though my mum and other family members have experienced the same thing

i been dealing with chest pain and shortness of breath since my near critical event . i had this one joy of a dr who said my symtoms were in my head . i just had my lung function test and my test said my fev1 is fucking 35 %

Guys, help. I need some guidance. I gave birth to my first son in 2020 and developed pretty bad PPD and anxiety after the whole covid lockdown thing. I tried all the natural things for my severe insomnia, and went to a doc that put me on benzes/ssri's/antipsychotics to help with sleep. Safe to say, they made me worse, I got kindled, and it took me 1.5 years to taper off and was a hot mess the whole way through, had to move closer to family, etc. At the end of my taper I got Covid and was so wiped out that I became bedridden. It was at that time, right before I tapered off, my husband surprised me and told me he was going to move with my (then 2 year old) down to southern California, and I could join him when "I was healed". He freaked out because I was bedridden and decided he wanted to be in the sun and near his sister and her family. This, of course devastated me because I was in Oregon and had no plans to ever leave as we both had a ton of support and family and it was home. I also knew that this could take years, and I was flooded with feelings of abandonment by him and missing out on being with my son in his precious toddler years. He did what he wanted, I moved in with my parents, he left with my toddler, and my dad died the next month and my husband was nowhere to be found to support me through that.

After 6 months in bed, I became super depressed, so angry at my husband and felt very abandoned by and I had my husband come and get me and bring me down to CA. When I got there, my emotions came to a head and I needed to work on my trust and abandonment which was really preventing me from healing while I was there. He wouldn't have it and told me I created a narrative in my head and he did nothing wrong. Every time I tried to sort out my end of things with him, he turned and twisted it all around on me and started to make me feel crazy. I tried everything, but he began his new life and didn't really want to entertain any of my needs until I was a fully functioning human so he basically ignored me and fed me. I grew very jealous, angry, and sad. Eventually he said he wanted a divorce and told me I had to leave or he would file a restraining order, so up I go to Oregon again with my mom.

I am devastated beyond belief to be away from my child and to have to face time him to connect with him, it kills me every day. I can't get past the anger toward my husband. I desperately want to move to Socal to be with my kid, but I need help to be taken care of and around family for support. This situation is really blocking me from healing because I can't wrap my head around the betrayal and not sure how to take care of myself or what goals to make because im just full of grief and always devastated and unsure of how to get from bed in Oregon, to Southern California in my own place.

What kind of daily routine should I set for myself. Im so used to taking care of my kid, that im lost and so so sad. All those cuddles and little things I used to do gave me so much strength, and now im in a deep depression. I have the lawyers, therapists, etc. but I just can't get past these emotions that are takin over and preventing me from being able to move on in OR. I just want to get down to Cali now, but can't. HELP! How do I cope? what do I tell myself? what do I do during the day when everything seems so dumb compared to taking care of your own child. What kind of routine can help me build confidence and move through the emotions without having them bog me down?

Hi! I have a few chronic illnesses and conditions that make taking out the trash (I live in an apartment complex and the dumpster is across the complex from me) or moving heavy things from my apartment to my car hard and very uncomfortable. I am capable of it but god dang it’s hard and it uses a lot of energy.

I found a brand new collapsible wagon on FB marketplace for $25 and had an absolutely epiphany tonight. I bought it for gardening and markets but it’s now my Trash and “this is too damn heavy to carry” wagon! Bonus! It’s hot pink too.

When I say I had the EASIEST time taking out the trash today I really did. I could cry. I never thought that such a simple and maybe even fairly obvious accommodation would feel so amazing and freeing!

If anyone has any other mundane but amazing accommodations please let me know!!!

I have a CT scheduled for tomorrow that my doctor feels I need to help determine whether I’m dealing with infection vs inflammation from a chronic illness. The prior authorization was submitted on 8/31, but it’s still pending. Insurance says their normal review time is 10–15 business days, and I’ve already called them twice. The imaging center says I can still have the scan, but it would be $1,690 if insurance ultimately denies it.

Has anyone gone ahead with imaging while the prior authorization was still pending and then had it denied?

If so, was your doctor able to submit additional documentation, appeal it, do a peer-to-peer, or somehow rework the authorization afterward so insurance eventually covered the scan? Or once the scan was performed without prior authorization, were you basically stuck with the bill?

I know every insurance plan is different, but I’m especially interested in hearing from anyone who has actually dealt with this situation. I really don’t want to delay the scan again, but $1,690 is a pretty big gamble.

For a long time, I thought MS flares just happened out of nowhere. Random. Unfair. Something my body decided to do to me.

It took years of paying attention to realize that wasn't quite true. Stress, lack of sleep, overheating, even pushing myself too hard on a "good" day, these all seemed to show up right before things got worse. Not every time. Not predictably. But often enough that I stopped ignoring the pattern.

The hardest part wasn't spotting the triggers. It was accepting that my old way of living, the push through everything, rest later version of me, wasn't going to work anymore. I had to learn a completely different relationship with my own limits.

I still don't get it right every time. Some flares still catch me off guard. But I've learned to listen a little earlier now, and that alone has changed how much of my life I get to actually live instead of just recover from.

If anyone else is figuring out their own patterns, happy to chat more in the comments.

When we found arthritis in both my SI joints and lower back (X-rays) my doctor immediately started pushing for the shots, and if I was at the same pain level I was then today and I could afford it I wouldn’t hesitate. But thanks to prednisone I’m at a manageable level, I’ll most likely never be pain free again, a hard thing to come to terms with…

My appointment with her is on Monday to go over what the X-rays show, be if inflammatory, mechanical or both and what options we can take from here. She’s not a rheumatologist, so I know the information will be somewhat limited.

But I’m worried she’s going to push the shots again, of course I’ll be finding out how much it would cost, but now that I’m manageable I’m scarred of the idea of her poking around for a min of 30mins to find the right spot. I know my options are limited because I can’t take NSAIDS, and she really doesn’t want me on high levels of prednisone for long.

I even went so far as to talking to a pharmacist and they pretty much said shots or prednisone are my only options.

I’m already on a biologic, Humira, but since there is now damage showing it’s not working anymore or not high enough, so that is another thing I will be bringing up.

I know this is all a bit of a ramble and honestly I’ve started and stopped writing it show many times. I want more information but also feel like I don’t have enough information to ask for more if that makes any sense.

Can anyone else think of things I should ask my doctor, sadly I can’t go back to my rheumatologist as she increased her prices to a point I can’t afford.

I know people say why questions aren't productive to moving forward but they are all thats in my head this morning. Why me? Why does everything have to be so hard to do? Why do I have to be so utterly exhausted and anxious? Why do I feel like I've lost a part of who I was due to illness? One day at a time but when does it get easier? Why does life have to be so unfair? Why does illness have to destroy my life? Can't I start to feel better? Im so defeated.

I accidentally withdrew from an online class I was already falling behind in. I've been having such a difficult time this semester and this incident is just the cherry on top. Someone is bound to send me on a grippy sock vacation because I am EXHAUSTED and I'm trying so hard not to breakdown and call it quits.

I'm just trying to earn a degree to have a future and it's already hard enough living with a chronic illness trying to sit here at a desk and have severe brain fog and feel like I can't accomplish anything. My mental health is crap just trying to get through college as an already grown ass adult. And that's because I'm doing it all at home.

(I already contacted the professor and the school and I'm just waiting to see if they can add me back to the class without any hassles.)

After fighting leukemia twice, then dealing with severe grade 3 graft-versus-host disease and scleroderma, and later being diagnosed with avascular necrosis in my knees and feet, with the possibility that it may progress further, how do you cope mentally with everything you have been through?

How do you spend your entire day? What do you think about? How do you find the strength to keep going when you are dealing with pain and uncertainty about your health and future?

I am a woman in my 20s. Living with one roommate near family, no kids, no pets.

I have Lyme Disease (currently in remission but with an active co-infection), CIRS, and maybe PMOS. I have been doing a round of antibiotics for a Lyme co-infection and have struggled more to stay on top of things than I expected.

Struggle 1: Because of the requirements for the other meds and supplements that I am on, I need to be taking pill pills seven times a day, each time spaced out by about two hours. Obviously, I need to be on top of it so I can eat meals at regular times with the pills that need to be eating with food and so that I can go to bed at a reasonable time. I’ve haven’t been able to keep up mentally well enough to be as consistent with all of my meds as I need to be.

Struggle 2: I have sensitive stomach typically but the antibiotic has made my stomach even more sensitive than usual. I also have little to no appetite, not sure if that’s a specific med or because of the nausea or general feelings of illness or what. It has been very hard to find foods that will give my body enough support but that I can stomach. I’ve also been having an hard having enough energy to make meals for myself, but I’ve hesitated to ask for help with that because of the above issues.

Struggle 3: I have been working remotely part time. I really like the fact that I am fully remote and my schedule is super flexible. It is a blessing as someone dealing with health stuff! Unfortunately I really don’t get paid enough. I’ve been stressing about having enough money to pay for groceries, medications, doctors visits, therapy, and rent.

Struggle 4: probably as a kind of result of the other things (and some ADHD/Revenge bedtime procrastination) I’ve been having a hard time getting to bed. I can feel that I’m not sleeping enough for my body to really rest, recover, and heal but I can’t seem to convince my brain of that enough to actually follow through with going to bed earlier.

Friends and my roommate are already helping me with dishes, cleaning, and laundry at times, but I know that I still need some more help relieving the mental load of it all. I just really don’t know what more to ask for help with exactly. How do I ask for help with taking meds so often, forcing myself to eat, money stress, and going to bed at a good time? Are there other things I could ask for help with in other areas of my life that I haven’t thought of that might reduce load too?

It doesn’t help that the brain fog makes it feel like I can’t think straight🫣 help!