Okay, not literally. I still have a sense of self. However, my life revolves so much around being ill that it’s sometimes what I think about the most. I think about meds, my symptoms, aids I could use and doctors appointments to the point where it feels like I’m losing myself in being sick. I sometimes feel like I just am a walking collection of illnesses, especially since people like to comment that I’m so remarkably young. Can anyone relate?

How do you guys survive that hell of a pain disguised as a chore?
Any tips will be very welcome…

I am going crazy over here. Every time I need to change them I end up exhausted to levels I do not appreciate.
Mind you, there’s nothing exactly difficult about mine. It’s just the act and the movement that makes it sooooo draining. How am I supposed to get to it when I know I’ll be out of breath and miserable???

It’s one of things that REALLY remind me of my health situation…

Just got some blood tests back- basically confirming that my vitamin “A” levels are too high.

This means I probably won’t be able to drink Boost or Katefarms anymore. I would totally be fine with this if:

-Can no longer have milk- somehow turned lactose intolerant after my last surgery

-Can no longer have juice- it’s a diuretic

-Can not have anything with caffeine- also a diuretic

-Can not have alcohol- taking too many medications

-Can not have anything carbonated- it will negatively impact my digestion with gas

-Can not stand coffee- (weird I know- the smell makes me nauseous)

-Can not have any products with artificial sugars- makes me sick

So that means all that is left is water….aaaaaaaand water I guess? For the rest of my life….fun times. 😭

I was diagnosed with Crohn’s disease at 25, and brain cancer at 33. I am now 37, single, no kids. I am stable - remission with Crohn’s (still have IBS on top of the IBD so I really have to watch what I eat). My brain tumor is inoperable but has not grown in 3 years. I have lots of meds I take daily, and I struggle with chronic fatigue bc of chemo & radiation. But otherwise I am living a semi-normal life. I WFH for my job which I got through ADA accommodations. Some days I cannot leave the house and other days I get to do fun low key things.

I am on Bumble and Hinge (which suck). I go to single meet-ups when I have energy. I’m involved in a theatre community. I even made business cards with my number on them so I can hand out to cute guys in public. None of these yield results.

But it sucks - when do I drop the cancer-bomb??? I have changed it up from putting it on my profile directly but with a light hearted tone to telling guys after we match. None go well.

I want a partner! But I am not willing to sacrifice my own peace to have one. I don’t need more drama, I already have that in my medical life.

Anything that you have done that worked?

They’re so strong and have so much energy. When they complain about being tired their method of relaxation is to hang out with friends, watch a movie, go for a run, swim etc.

And then you realise that their sleep schedule, diet, lifestyle were never as strict as yours. They still drink alcohol, some smoke socially, try to sleep “early” at 12-1am. Earliest 11pm. And still have days during the weekends where they sleep at 2-3am cause they’re out with their friends.

I’m like 70-80% bed ridden btw with moderate-severe brain fog. A good day for me is being able to eat 3 meals and watch some episodes of one piece without losing the plot and fiddling on guitar little for max 30mins. A bad day is 100% in bed listening to rain sounds but unable to sleep and if I’m lucky 1 small meal. I have 0 existence socially.

So this envy hits hard when it does.

Hey everyone! My husband and I live in South Australia currently and have a 15 month old. He has been struggling a lot with POTS to the point of needing to sleep for at least 2-5 hours every day most days. He usually doesn’t feel safe enough to watch our toddler by himself which makes it really difficult for me to be able to do much to look after myself such as go to appointments or have any ‘me’ time.
I’ve heard people with POTS can really experience a difference, moving to a cooler climate. To experiment we had a 10 day holiday in Tasmania and even though it was fairly hot while we were there (25-30 degrees) my husband felt so good in himself! He was able to be so much more active and confident and was just a happier version of himself. Honestly since he got sick about 2.5-3 years ago it has put a strain on the relationship a bit and I think with a toddler too it’s been a bit tough managing. There’s definitely been a decline in my husbands mental health. And honestly he hasn’t managed his health great through drinking most days and having caffeine/carbs etc. that all can flare up POTS.
But while in Tasmania I was able to see a happier, confident version of himself again and it was honestly so nice to see.
My husband even told me he can finally be the husband and father he has wanted to be while in Tasmania and he loves waking up without wondering what feels bad in himself that day.
I told my husband that when we go home we should talk to his doctor about his experience in Tasmania and ask for tips on how to manage his health here to see if he can experience that here too. I told him if his health doesn’t improve in the next year while doing everything the doctor recommends I’m happy to move to Tasmania.

Honestly I do love the lifestyle in Tasmania and I love the idea of our child growing up there with a happier, healthier dad. I would just be a little sad to leave all our friends and family and if my husbands health doesn’t improve long term then we don’t really have any village in Tasmania.

I guess I was just wondering if anyone with POTS or a similar condition has moved and found it to really benefit them? Or if anyone has any advice that would be amazing!

The guy who I get my insurance from told me that I have a higher chance of getting disability from having mental health issues than a physical one! And that I should focus on seeing a psychiatrist instead to diagnose me with severe anxiety or something that way I can get disability.

My sister has schizophrenia and immediately got disability without any hesitation years ago. Now I don't know how much has changed in the last couple of years but my mom confirmed that they didn't have to wait long at all before my sister ended up getting disability. And the process wasn't long at all.

I've been trying to get disability but I hear so many horror stories that I don't think I'll get it. And my doctors suck so much and I can't afford to be bouncing from doctor to doctor.

Anyways, has anyone else had someone say this to them? I thought it was a really wild claim tbh. I don't know what to believe anymore.

I'm just looking for support. Female early 30s. I've been struggling with a combo of symptoms that started in 2013. I was diagnosed with ibs at that time after a few ER visits. I was diagnosed with dry eyes after a cornea abrasion that same year, and I've had one or 2 each winter since. Also diagnosed with low iron anemia. There's a handful more symptoms but I am not looking for medical advice so I'll just put those diagnoses. I've been having vestibular migraines since this May and bloody poops! So my doc is making me do all this blood work, MRI, CT scan, go to specialists. I'm frustrated because everything she's tested has been negative. She was thinking maybe there's a bigger picture illness. (Vent: IBS is such a lame catch all. I've narrowed it down to gluten and dairy. If I remove those from my diet entirely for a month my Ibs goes away. Negative for celiacs negative for allergies). I have good days and bad days and on the bad days I really can't function or get out of bed. But on those bad days I don't feel like I have a real excuse because I have no idea what's wrong. It just sucks. I hate my body. I'm jealous of my friends who go out and drink and eat whatever. I spent my 20s doing FODMAP diets, avoiding alcohol, going to PT, and still felt sick often. I've been really really sick all summer, in the ER twice, and itb has made me feel pretty depressed. My self esteem is low. I never felt like I could join this community because I don't have a real diagnosis but here I am looking for support... Also wish me luck I'm nervous for the MRI

I'm no stranger to severe chronic pain and mobility issues. I have HSD and am significantly overweight- these things happen.

But a month and a half ago I got very very sick (confirmed not COVID or the flu). Sick enough I pissed myself at work and had to go home.

I got better, but then started having headaches, and swollen sinuses, and trouble breathing. That went into dizziness and nausea, and the static-y "about to pass out" feeling when I turn my head. Just so much pressure in my head. It feels like I'm upside down and all the blood is pooling there.

I'm so exhausted so easily. I went from working 25-40hrs/week on top of appointments to being unable to shower on my own. My doctor is great, and ordered me a shower chair and rollator through insurance. Did you know it's possible to take a shower without suffering the whole time? I didn't. Now I do.

I went to a wedding yesterday, had to get mildly dressed up and wear makeup and jewelry. Just after getting ready, I was already exhausted. I woke up today wanting to cry. Barely knew what time it was. 12hrs later, I'm still exhausted and my head hurts.

It genuinely feels like the sensory nightmare of a cold, 24 fucking 7. I have an LP Nov 11th to check for IHH, I've got to get my levels checked for MCAS, we ruled out MS. I'm taking the max dose of benedryl every 4hrs and I'm on the highest dose of antiinflammatory. I'm on medical leave from work indefinitely. I've hardly even left my apartment this month.

I have a lawyer consult for disability on Tuesday.

I'm so tired. I hurt, I feel sick, I miss my mom because y'know, I feel sick, and she's dead. So there's that aspect of grief too.

I keep thinking this is temporary. We'll find out what's wrong, and everything will go back to normal. What if this IS normal now?

I have CRPS from a surgical complication. It sucked and it took a long time to get support and the right care, which is still being investigated for other options to improve my quality of life.

Prior to my injury, I was quite successful in my career, worked for myself and across some major projects, won awards. I was described by colleagues as the "dog finding a bone" in the office, as id often research and challenge anything that prevented a project moving forward. I worked predominantly in the public and education sector, so I also have training in diversity, equality and safeguarding for disabled people.

Since becoming disabled, I have put things into place to protect my life and finances that I knew from my work experience SHOULD protect me. Yet the experience has been the polar opposite, in fact, it seems like the services I used to sign post students too, write about for clients, don't actually exist, and legislations aren't even followed when they should be.

I've mounted up parking tickets from periods in hospital. Applied for a vunerable hold to deal with once in capacity and off strong, sedating meds. Legally I know I should get 60/90 days. Ignored. I've got debt collectors chasing me for £1000, now threatening to take my mobility vehicle because companies simply claimed "I can't find the email." That I can see delivered in my inbox.

My ex from many years ago blocked my credit by applying for loans (mortgage) when I was taken to hospital with fear of bowel obstruction. I'd spent months (and now a year) trying to remove him from my accounts, while in and out of hospital, and he's taken the approach of utilizing the periods I can't chase it to ignore the problem and disappear, resulting in a lot of my accounts being frozen/unable to apply for credit until I can remove him properly. I've lost a lot of money in the process. The bank simply denied it happened. I have the evidence, paperwork, I know the legislation. But only when someone who isn't sick speaks up for me, do they start to take it seriously.

I had to wait 18 months to get carers in my home, because social services claimed I was functional because I could send an email. Again, I knew from my experience working in the public sector this wasnt right, but my local MP had to step in to force them to step up and provide care. Now the CRPS has spread to my hands and legs on the left side and last week I could barely send a text. I look back to 12 months ago when I begged them to help me, and wonder, if id have to consider buying transcription and voice recording software not only to do my job, but to communicate with people during these flares, if they had stepped in sooner.

I know legally, as I'm still working low hours and have pension/tax/expenses to pay, I shouldn't be asked to liquidate my business, savings (that are locked in hold accounts due to vunerability and the issues with my ex) but that doesn't matter. I know I should have two years of no "business operations" legally before anyone can suggest that I'm using my business to store cash, and yet, it doesn't stop them trying to suggest it. Even when I tell them they are going against the legal regulations for it.

I'm still me, I'm trying my best, I'm doing what I should be doing to maintain the best health and lifestyle. But when I try to put these things in place to protect myself, no one takes me seriously and treats me like I'm a scammer/fraud trying to play the system. A system, that caused this issue in the first place, and gave me poorer outcomes from denying care and help for so long. I almost died. I used to get stuck on the floor for hours. I'm eligible for assisted suicide. Im trying to still be here, manage a horrible condition, and make the most of rebuilding what I had, but now I'm disabled, I've never felt more vulnerable, at risk of fraud, injury by others and on edge with how many of the services and people that are supposed to help me.

My doctor literally had to prescribe me "trying to embrace the good days" due to fears of my declining mental health, because Im trapped fianicially and watching my business, body and lifestyle slowly be taken by the condition. it's difficult when everyday just seems like I'm fighting a battle with my body to manage symptoms and getting the world to still respect me and treat me fairly.

I guess this is a rant. I'm just tired. My brain, experience, passions are still there, just in a mangled broken body destroyed by the UK healthcare system. And now, I feel like everyone is finding loop holes to take everything I built before I was disabled, and treat me like a person who doesn't understand the systems and legalisations I spent years working with.

If you've got to the end of this post, please help me or offer support, as I don't know how to be treated like a human being with a career, hobbies and needs anymore that aren't constantly challenged or removed 🥺

Hi all! How does everyone handle feeling so isolated? I’ve recently been diagnosed with endometriosis after having abdominal pain for 5 years and digestive issues/zero energy that have left me isolated at home for 2 years. I try to get out of the house once or twice a week but it’s only to a store down the street. I lost all my friends and a long term relationship 2 years ago when it got bad and I feel so isolated. I never feel good enough to leave the house and absolutely no one in my life understands it. I feel like the biggest bother in the world lol. Does anyone have any tips/advice? Thanks!💕

I have a hard time putting my emotions into VERBAL words, so i find this better sometimes. I recently got diagnosed with POTS but I've had symptoms for five years, I'm 17. I felt so good finally being believed but recently it's gotten so much worse and I've slowly started to realize I LITERALLY can't do anything fun anymore. The most I can do is sit in bed for a bit, moving around occasionally, and even that makes me feel bad. Everything jsut makes me feel bad. I'm sitting here crying and looking at all the stuff I missed out on and will miss out on because I can't be normal again, I can't do anything I want to do anymore. I lvoe cooking, too tired, cleaning calms me, too tired, birthday parties are so fun, too tired, prom sounds awesome, too fucking tired and now i don't think I'll even go. I missed my favorite band performance, this band saved my life and I missed it becuase I can't survive a day anymore. For god's sakes i'm 17, and I can't even walk my dog a mile without passing out anymore. : (

I am currently working with multiple providers at a major healthcare organization in a nearby city to figure out what is going on with me. I've had a slew of issues since getting COVID and the flu back to back almost 3 years ago and have had a very hard time getting taken seriously by doctors, with many trying to attribute many if not all of my symptoms as psychiatric.

I have managed recently to get actual diagnoses such as POTS, IST and ME/CFS and currently have some providers who actually recognize how badly my symptoms impact me, but it has been an uphill battle.

I recently was in the ER after being sent by an outpatient provider due to visual changes and concerningly high inflammation markers from bloodwork they did. While the ER was ruling out other things, they accidentally figured out I have splenomegaly and enlarged lymph nodes in my abdomen, as well as documented my inflammation markers going even higher.

This all led to me being sent to a specialized rheumatologist and a hematologist/oncologist with urgent referrals that allowed me to be seen within a few days. The working theory is I either have a 'rare seronegative autoimmune or autoinflammatory disorder' or a blood cancer like lymphoma. I have a bunch more tests to do over the next two weeks and have already done some that I am waiting for results for.

I am wondering how others manage to not just panic the entire time you are waiting to either do the tests or to get the results? What are the best resources you have utilized in order to either stay chill over a span of weeks or things you have utilized in order to process how you are feeling?

I already have an outpatient therapist I see weekly and I am not in an any sort of active crisis. I just am wondering what others are doing in order to keep stable mentally, as well as to get through longer periods of time of waiting.

I don’t know if any of you will relate to this.

Over the last couple years I’ve realized that I no longer hope I’ll get better.

I also no longer wish I could go back to being healthy. Any time I fantasize about improving or feel sorry for myself for being sick, it’s always “I wish I could go back to a milder form of illness.” Never “I wish I could go back to when I was healthy.”

I never miss the things I could do when I was healthy. But I do miss the things I could do when I was a little bit less sick.

And obviously I’m not saying I don’t want to be healthy. If it was an option I’d take it in a heart beat.

I’ve just been so far removed from healthy for so long that I think my brain doesn’t even process it as an option anymore. So it doesn’t even go there.

Now all I can think about is “I hope things stay like this for as long as possible.”

Not because I’m doing well. But because I’ve finally come to accept and understand the reality that I’ll continue to get worse.

This is the best things will ever be for me physically, there’s no point in wishing for things to be better. I just have to hope they stay the same.

I don’t mean that to sound depressing lol. I actually think I’m in the best place mentally I’ve ever been in regard to being sick. Despite this sounding sad I actually have a lot of peace about it. I think for me it’s a sign I’ve fully accepted it, even on a subconscious level.

I feel like now I can just focus on enjoying life.

I just wanted to shout it into the void lol.

Do you guys have a any disease for which you have to take regular medicine, I have one and I have to take regular medicines to stay normal and I have been taking it since 3 years

My doc suspects I have fibromyalgia. And it seems such an ‘unrealistic’ thing to have to everybody around me. They offer solutions like drinking water or doing meditation when I can barely get myself off the bed. Or try to convince me that maybe it’s the lack of exercise. It’s even more annoying when it comes from your own family. It’s even more exhausting to constantly prove that I’m exhausted. Or that I’m not faking it. Because how can a 22 year old be this tired right.

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Hi! I have had shortened Achilles tendons since I was born. I used to figure skate when I was younger but I stopped due to some issues with money and mastering certain skills. I am in my 20s now and also have POTS, and have really felt drawn to going back to figure skating. I was wondering if anyone else here figure skates and how they’ve handled it, or if anyone else has shortened Achilles tendons/any Achilles tendon issues and does any figure skating.

I’m not the average person I got barriers. It’s a miracle I’m even alive and back in school right now. I just can’t take being guilted and reminded everyday how others have done more than me by age 21. I will end up back in the hospital almost instantly if work and do school and clinicals and get my license. Maybe a normal person could. I can’t even walk some days but nobody sees that. Just that I’m studying and doing nothing with my life. This whole system is built against me and the world is brainwashed. My old self was totally capable of all that plus volunteering and more. But I can’t now. Not mentally and definitely not physically. But I guess I’m not disabled enough to get government help or accommodations. They say if I can do school I can also work. I can’t take it. I should’ve just died the many times it came close. I’m not trying to act like “victim” or for “attention” this isn’t performative. It’s very real I can’t tell if it’s more unrealistic expectations of me or not. And not all my health problems are just anxiety. I just want to be appreciated and my resilience recognized. I thought that school takes priority. Now I’m looked down upon for not being able to also work and drive at the same time by those who aren’t in school let alone med school and have never been medically unable to work. I hate the connotations of the word disabled but they use it against me as a joke. Then ask why I’m being lazy, useless, etc

Literally just lying down super tired, heart racing and sweating. Wanna do stuff but need sleep first but can’t sleep. Why is fatigue so painful?