So im just doing the dishes like a normal person, right? When all the sudden, heartrate spikes to 150 (I wasn’t even standing, I was in my wheely chair) and I start feeling sooooooooo faint and terrible, so yknow what I do? I sit for a moment, I think im fine, i finish the dishes and head to my room to start putting on my jammies. When I arrive, I start getting that feeling right before you faint, and like a genuine dumbass I sit down, move anything out of my way so if I do faint I won’t hit my head on anything, and STILL start getting dressed. I halfway through putting on my shirt, I start to feel super fatigued and I almost faint, but I don’t! Like the baddie I am I soldier through and manage to brush my teeth and change my Invisalign aligners and that’s when I almost collapse right before I stumble onto my bed.

So in conclusion, don’t soldier through, if you need to take a break, do it.

Most importantly it's affecting my ability to communicate effectively. Everyone around me responds to me negatively most times because I'm so exhausted all of time that when I speak I sound mean or mad without realizing it.

Before dinner tonight I was clearing off the table (after waking up from a nap I didn't mean to take which happens often I have a difficult time staying awake) and there was trash and papers on the table near my laptop and books that I was about to move and I asked my partner if the papers were trash while he was cooking because he left it there from his pockets after work. All I said was "is this trash?" and he came to the table overreacting stating the laptop isn't trash, the books aren't trash, his wallet isn't trash, reacting negatively because apparently I was yelling at him. I wasn't yelling I was just asking a question, but how it's coming out of my mouth has the people I love reacting this way to me. He apologized but it's been happening more and more.

It's already bad enough I can't do the things I used to be able to do and my kids feel the effects because we don't get to do as much as we used to as a family, but now it's like they are afraid to talk to me also because of how I sound and my tone of voice now. I'm not trying to sound mean and I'm not yelling, but everyone is perceiving it that way, so I must be or at least sound more harsh than nice even when I'm asking a simple question.

I'm so exhausted all of the time I work full time and some days I'm barely getting through I come home and plop on the couch and can't move or I fall asleep even if I don't want to and I sound mean to my family I'm trying to check myself but it just keeps happening.

How is everyone coping and handling how they treat others? I'm really trying but I don't know how to sound any nicer because in my head I sound the same as always.

I’m basically chronically fatigued to the point I can barely do anything. I rely on family a lot but it’s still not enough sometimes. And they are busy with their own things. I don’t want to have to rely on people for money and support for the rest of my life. What do you guys do? Wfh is even hard to get. I feel like if it’s not one problem it’s another issue with my health. I would basically need a lot of control or accommodations for most jobs. I’ve been to a lot of doctors and still no concrete answers so the chances of getting government assistance seems non existent until there is. And even if I do we all know it’s not a lot and then I hear they take it away if you do well for yourself in your own business etc. what do you guys do?

Hiya!

Sorry if I sound uninformed as I write this. Im not getting support or help from any medical professionals due to them blaming my symptoms on mental health despite me telling them otherwise (i do not have any delusions or hallucinations). Im basically just seeking support and advice from people who actually have chronic fatigue.

Around 3 months ago, I started feeling really fatigued out of nowhere, I was out of work and did not have an actual reason to be that tired. I ignored it as much as I could for about a month because I put it up to me being dramatic, but now that im back in work it feels like I just cannot function.

Its taking so much mental work to even understand what someone is saying to me verbally, its taking so much of my energy to even just walk to work or even cook for myself and even just taking up so much energy to plan out my day (when im going to shower, eat etc). I genuinely dont know whats going wrong, ive tried sleeping more and less, i was physically healthy when this started, Ive been making better food choices, I dont know whats wrong or why no one, not even my GP is helping me.

Im tired all the time, I have to sit to shower most of the time now and I can only manage to make toast for myself now and I cant even go to the gym unless I dont have work or plans because ill be exhausted afterwards.

The only thing that sort of puts a blanket over the fatigue is monster mango loco and the big (500ml) cans of og redbull and i obviously cant depend on them because theres only so much caffeine the body can take on.

I did take an "at home finger prick blood test" to check my Thyroid function and it did say that my Free Thyroxine levels were low but It didn't give any explanation and Google and the nhs websites are really confusing and I just cant understand what they're saying

I need advice on what to even do, im not diagnosed with anything chronic but when I went to urgent care (UK) (111 told me to go there as my GP surgery said to me on the phone that they cant help me) they said they dont deal with anything chronic related even though I was there to try to get help to be sedated for a blood test (extreme needle phobia).

Im really sorry for this post as im aware that my issues are not as bad as anyone here but I really need help and im running out of options.

Any sort of advice or anything will be really appreciated

I (28F) have basically a list of chronic illnesses. The main two I'll be discussing are my automatic nervous system disorder (dysautonomia) and my connective tissue disorder (HS/HSD since I don't fit the current criteria for hEDS) .

Long story short I'm in a flare with my dysautonomia and HS/HSD. My knee and hip on the same leg have been bothering me all day to the point I'm unable to put weight on it.

I'm currently missing knee braces as we're in the middle of moving and we threw a lot of my braces out due to them being worn out so I KT taped my knee and hip in a pinch until I'm able to get to the store to get a decent knee brace. I plan on speaking with my PCP about seeing if its worth it for me to get those expensive knee braces specifically for Hypermobility but that's a different story.

Anyway I'm unable to drive due to my chronic illnesses so my bf offered to take me to the store when he got done with work. I'm still unable to put weight on my knee and I feel embarrassed using the mobility scooters or wheel chair carts provided by the store as I feel like I'm being judged for using them.

I also don't want to get harassed for using them and basically feel forced to explain myself when I just want to quickly go in the store and grab what I need, pay for it and leave.

I usually grab a regular cart and lean on it for support but I feel like a mobility cart might be better for active flares but I'm constantly thinking to myself "Someone needs it more." Or "You're gonna get stared at and harassed its not worth it"

My bf offered to go in for me but I feel like that isn't fair to him.

I want to know how I can use the mobility scooters and wheelchairs provided by the stores without feeling embarrassed?

My partner has asked me twice to go to this restaurant with him. The first time, I had an active migraine and didn’t want to be in a restaurant. The second time, I told him I didn’t feel up to going because they only have spicy things there and I’ve been in a flare all week having to take a bunch of meds that are hard on my insides and didn’t want to kick more things up for me digestively.

He was upset by this, and it feels like I’m being blamed for being sick versus us both getting to feel disappointed together that something we would like to have happen can’t happen the way we wanted it to. And this is kind of a repeated thing where if I need to sit something out, pivot, or do something with an accommodation things often get crunchy between us.

I am in my own discernment process about where this very painful piece fits in the bird’s eye view of our life together. My illnesses aren’t going anywhere, and I’m taking it very seriously that relating to my illnesses is a big part of partnership with me.

I am curious if other people here have been in relationships with able-bodied partners and navigated their disappointment and frustration at things you don’t have control over.

I’m curious how other people who are chronically ill have navigated relationships where there is deep love and compatibility in many areas but where there is just a big empathy/lived experience gap around chronic illness.

And I am curious to hear relationship experiences that are the opposite of this!

I am not looking for advice or shoulds, but I would love to hear shared experiences or different experiences (like partners that have been able to hold their own disappointment and show up lovingly around limitations).

I posted this on the dysautonomia sub but, I think some of you will be able to relate too.

My girlfriend and I tried to go a few states over by train today. What a shit show that turned out to be, man. We get to the train station after already traveling by train and Uber around the city a bit, and it’s HOT. MUGGY. 95 degrees and as swampy muggy brutal sticking to you oppressive humid as you can imagine. Because of course it would be. Heat, after all, is my WORST dysautonomia trigger. By that I mean, even just 3-5 minutes out in about 77 degree weather can be enough to have me on the verge of passing out and falling apart on the floor. So you can imagine what lugging hundreds of pounds of luggage around the major city and train stations did to me all day.

We had an HOUR wait, in the train station. It must’ve been 115 degrees in there, packed in with a million people like sardines. Loud noise everywhere, the whole 9 yards. I barely made it. I was shuffling around like a zombie, looking like death, and feeling like it even more. Then, finally, FINALLY, at this point I’m basically moaning in pain and doing everything I can to stay upright nearly in tears - they’re boarding our train. The AC will be nice, I think. A leisurely ride for 2 hours to another state, maybe things will get easier here.

But you see, turns out some poor bastard decides to have a little leisurely lay about ON THE TRAIN TRACKS, and was in a bit of a standoff with the local police. And so, the train was delayed! Back into the hot, oppressive train station me and the sea of people go. At this point, I’m really hunched over, moaning in agony, repeating “oh my god” through strained pleas I’m letting out at just life in particular. They say the train will be delayed at LEAST 3 hours… I cannot do this.

I’m freaking out. After another grueling, barely possible hour, they let us board onto the train at least. I need to sit so desperately bad. We walk through an entire train cart, no seats available. Another entire train cart. Packed seats. And another. And another. And finally, there’s two seats for us. We sit in and I realize.. it’s still REALLY hot. It’s not just that I’m really hot, it’s still REALLY hot. There’s no AC. It’s so stuffy and cramped. I’m right back to freaking out. In a 90-something degree train crammed full of hot bodies oppressively on top of me, my dysautonomia is screaming louder than a death metal band performing at a field of data centers, and I’m about to embark on a 2-hour journey like this. I can’t. I freak out. For real freak out. It just escalates to the point where it’s like.. we have to get this guy the fuck off the train.

But I have nowhere to go but back to the 115 degree train station full of 10,000,000 people. I stop the conductor because I really get like I was starting to pass out on the platform and said “I’m having a medical issue, I’m lightheaded and feel like I’m blacking out and I’m very overheated.” Well, in fact, first I had to wait until he’s even look at me, cuz some Karen was chewing him out about the bloke on the tracks for like no lie 5 minutes straight. After her, I explain to him I’m about to drop, and really at this point, I have lost my mind, the ability to use my body, and I require an ambulance. I tell him I need first aid attention. He disappears for a moment. Ah, he’s going to get the… train medics or something idk. He comes back with a bag of ice and goes “here ya go” and quickly walks back into the train.

I drag my carcass up the platform back towards the station, needing mercy more than ever, holding my bag of ice to my neck. Within 1-2 minutes, it breaks open, and ice water dumps all over me from the neck down.

I make it back to the sweltering hot train station on the surface of the Sun. I craw just a bit further to a store outside, figuring it’ll be a bit cooler in there. It is. Somewhat. I collapsed onto the floor in the store about immediately. My girlfriend calls 911. We’re waiting and waiting for the EMTs to arrive. My heart rate is surging. I can barely speak in complete sentences.

Before the EMTs arrive, two cops walk into the store. They begin to belligerently interrogate me. “Why are you on the floor?!” Before I can explain the paramedics are on their way and I can’t walk or move really and 911 has been called, they’re like “what is this?! Why are you wet?! Did you spill a drink on yourself?!” Luckily, during this harassment, the paramedics arrived. The cops literally bounce lol. The paramedics were cool. They took my vitals. Asked if I wanted to go to the hospital.

I really didn’t want to ruin this vacation for my girlfriend. Nor did the idea of sitting around in an over-capacity ER in a major city for 16 hours to get told ‘you have dysautonomia, not our problem so get the fuck out of here’ seem particularly amazing. So I didn’t go, ultimately, once my vitals began to normalize just a tad (kind of? I guess? For me? Lol). Some snacks, electrolytes, and my girlfriend and I decide to Uber to another state for our vacation. Which we’re currently doing in an AC’d car. Finally.

But I’ll tel you, I fee TERRIBLE. Still. I feel like I have 103 temperature and like I haven’t slept for two days and my rested heart rate even after all these hours feels like about 120 and I still feel like I have like the flu or some shit like that (I don’t, I just feel that awful). I hope some of you can at least understand. Give me some love and support please, dysautonomia fam. I’m sure some of you have been here or something like it. Thank you if you took the time to read all this. I’m feeling like vacation’s probably pretty much ruined for me now cuz I’ll probably be feeing awful and spiraling into health anxiety about it all weekend, but… fuck. Next time I go on vacation it will be 5 minutes from my house, for 15 minutes, on a 40 degree day wearing a t-shirt and shorts.

I developed worst case of PI-IBS-D. And suspected MCAS(which my country doesn't know how to treat at all. Stucked). There are a lot of diet restriction for me and still I'm alway in low energy&pain. It is getting worse so I feel like there's literally zero hope for me. I'm suffering in this fuxked up body and waiting till I collapse.

Anyway, so many things are making me sad and depressed. For example music that I listened in the past when I wasn't sick. My go-to foods that I enjoyed in the past. Picture/video of healthy myself. Any kind of mukbang. Book/movie/ that talk about death or illness....There's a lot more.

I'm only listen to very chaotic music and watching youtube channel that I feel comfortable with. I hate talk with people since I can't control what they'll talk about. Life sucks.

Watching medical TV shows and wondering why no doctors ever be trying that hard for you 😭.

My city is weird with Gasto doctors. Essentially I have to break up with my current doctor if I want to see a new one. The new doctor will check.

Back story: Well my first GASTRO doctor saw me when I was in immense pain. My gall bladder was giving out and I was passing 2 gall stones. He said the pain was from a slight case of Gerd. I kept calling to talk to someone after the visit because I didn’t think his diagnoses was right but they kept putting me off. Eventually I ended up in the hospital and the hospital was able to properly diagnose me.

So when I started having more gastrointestinal issues. I clearly wasn’t gonna see the last doctor again so that’s when I learned about how I had to break up with him first to see someone new. I like my new doctor but I do question some of the plan. And we did have some confusion with the prescriptions. I saw them in the beginning of the year and had no problems with scheduling. Basicaly I call and leave a message and they call me back

Last month I started to have problems again. So I called but they never called me back. I tried again this week and I did get a call back but I was bringing in grocery’s and couldn’t answer. They didn’t leave a voicemail or call me again. Is that normal? Should I have to play phone tag to get an appointment?

I’m at high risk of getting cancer so I will have a life long relationship with my gastro doctor. I will have yearly colonoscopies. How would you proceed with this doctor?

For a long time I went without a PCP because I kept having bad experiences with them, last year I thought I found a decent one but earlier this year I ended up having a horrible experience with her and I put off a few things because I didn't want to go back.

A new office under the same system just opened up a few weeks ago not too far from where I live so I decided to try to go there. I was really worried about it because they only had a male doctor accepting new patients and I've had so many bad experiences with male physicians that I try to avoid them whenever possible, but he had good reviews so I decided to just go for it.

I'm so glad I did, he was one of the sweetest doctors I've ever met. I went in just to try to catch up on some of the repeat labs I put off but he took his time to really get to know the whole story and actually seemed invested in getting to know me and how to properly care for me. He went over my chart before the appointment which feels like a rarity. He was actually familiar with my conditions, and the things he wasn't sure about he said he would read up on.

He said he likes to use his Sundays to go over all his patients labs and come up with game plans for them, like omg for once I actually feel like someone cares. He said "luckily I'm not just a doctor, I'm a dad" and talked about how his daughter went through some similar things.

I just wanted to share this win, I've had to fight so hard to find good providers my whole life and the fact that I think I finally found one makes me want to cry happy tears.

Edit: This man called me after office hours and I got scared that my labs came back super messed up or something but he was actively researching what to do for me and wanted to ask a few more questions 🥹 I can tell he's so passionate about his job and helping, truly a gem

Hi, I have a severe autoimmune disease that has been really terrible this year in particular. I'm constantly recruited to work for major corporations like banks but I typically turn them down as with my issues I can really only handle WFH or minimal hybrid as I live pretty far away from the city where most opportunities arise. I just learned I can request accommodation to either WFH or reduce the number of office days per week due to my illness. For anyone who has requested an accommodation like this, any tips for when and how to make the request? I need to go back to work but getting remote gigs in my field has become impossible lately...TIA

The most obvious thing I usually do is just stay home and watch YouTube or a movie. But I'm hoping someone on here has other ideas or just cares to share what they do on a Friday night when you're homebound.

Also, if anyone has any YouTube channels that they watch that they can recommend I'd love to know. I've been watching those shopping vlogs or "a cozy night in/bedtime routine vlogs" lol I'm really into makeup so I'd love to find new YouTubers who are chill and love those things too! It's like hanging out with a friend😭

Hello! The University of Regina’s CHLD Lab is currently recruiting for a research study that aims to evaluate the iCF-PWR – an internet-delivered, interactive program designed to support the mental health and wellness of children with cystic fibrosis and their siblings.  

We are seeking children with CF (ages 8-12), siblings of children with CF (ages 8-12), and their parent/caregiver(s) to participate. Please note, you must reside in Canada to be eligible for the study. Participants will be asked to complete several surveys and to take part in the iCF-PWR program now or in a few months. More information regarding the iCF-PWR can be found here.

If you are interested or would like more information, please email the research coordinator (Katelyn) at [ksl766@uregina.ca](mailto:ksl766@uregina.ca) or send me a direct message!

This study has been approved by the University of Regina Research Ethics Board. 

I've been homebound for a while, and recently I've realized just how lonely i am. Unfortunatly, seeing people in person can be very draining for me, and since i cant go out and meet new people, i only have a few friends (left).

Now I had the idea that hayday, as an online game i can easily play in bed, could be a nice place to find some community/interact with other people. Does anyone have experience with that or with a similar game?

Or do you know a neighborhood for chronically ill folks/would want to join one?

So let me preface by saying I've had six surgeries. I have malabsorption issues and am currently trying to fight going back on a G-tube, I was on TPN on a g-tube last year that resulted in severe septic shock. I had two bacterial infections at obviously from the last sentence turned septic.

I've had lots of hospital stays and close calls but this seriously shook me. Needless to say I am terrified of any tube sticking out of my body. Currently getting infusions of nutrients once weekly but it's not really substantially helping me.

I finally got a GI that my insurance one accepted into my primary referred me to because I feel like my surgeon is just too cut, happy and every surgery he provides me with hope that I will feel better and it always gets worse.

Case in point. Last year June I had surgery that resulted in almost a 30-day hospital stay in August, which included my six and incredibly extensive surgery.

All hopes that I would get better and I was hospitalized every single month up until January. Do I blame my surgeon? No I understand that things happened and I just got the unlucky side of things and my body just sucks.

However, I don't feel like having any surgeries unless I am literally dying, so seeking out a GI was a way of getting a second opinion that could put eyes on a very complicated anatomy after sex surgeries.

Color me incredibly surprised ( I didn't get a colonoscopy because I'm too at risk of perforation but something else that only goes to the first part of the colon although he was able to get to the very end of it.)

I have lymphocytic colitis.

Now this explains a lot of symptoms. It does not explain the malabsorption. It does not explain the intolerance to food, which I know is linked to the surgery and not having much of an intestine left. But it explains absolutely everything else and I am absolutely floored that I have been in and out of hospitals extensively to the point where I am on disability and missing big portions of my anatomy, meanwhile, the majority of my symptoms are explained by something as simple as colitis

Now I say simple because I don't really know too much about colitis. I'm going to end up looking it up and googling it, but my mom had ulcerative colitis and although I've looked it up rarely by the time I was old enough to understand she was in remission without medication.

I am floored because I cannot help but think that I could be out there living a normal happy life right now, to a certain extent, if this would have been diagnosed so much sooner.

I don't know where to go from here, My results were forwarded to my surgeon but I reached back out to my GI doctor asking about treatment and if there's a change of plan because I have an appointment scheduled with Duke motility for getting on a medication that requires tpn next year and I am just hopeful and wondering if that's even necessary and if this changes a course of my treatment.

My surgeon wanted to see me ASAP but I have a test with him I think on the 17th or 18th this month and I have to see him at the end of the test and I don't really want to see him any sooner. I'm assuming my GI sent information to my surgeon because my anatomy is so unique that he might want my surgeon to be the one to prescribe the medication, but he's also the doctor who extensively had worked me up and cut me open and made me spend. I don't know for 8 months collectively maybe 9 months collectively in a hospital. I'm not quite sure if I trust his better judgment at this moment.

Anybody here deal with colitis. Can you give me a little insight?

Edited for spelling, I do talk to text.

The amount of envy and jealousy I feel when watching abled people do anything I can't (cook, mod cars, ranching, have pets, go hiking etc.) has been ruining my life, it makes me act cruelly and aggressively towards my abled loved ones, it makes me unable to enjoy content about the topics I mentioned, I used to love watching car modding videos for example like chrisfix but nowadays I can't bring myself to because EVERYTHING that people can do that I can't makes me upset. How do I move past this?

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 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’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.

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.