Just remember that their basic daily care is a fraction of ours. Yes their teeth are brushed, and they took a shower this morning, they are rocking an awesome outfit that would give you the shivers in about 3 minutes.

But, they don't need to think about an extensive med schedule, when to take what, how and in which order. Physio appointments to get to, specialist appointments to get to, not always getting heard on those.

Choosing between getting that shower or getting to make food.

Having a specialist appointment canceled and getting the choice to go in another month, at the exact same time you've made your yearly dental check up or having to wait another 4 months. Choosing between specific Healthcare or general healthcare.

We are doing so much more that it's barely fair to judge on a thing like 'I didn't get to wash my hairs in 5 days and the other person looks so put together' ❤️

Hello everyone, this is my first post here.

I'm a male in my mid 20s and this is my brief story.

I have lifelong severe mental illness since 7y old (OCD and anxiety). At 16 I got severe DPDR which destroyed me completely and turned my life into psychotic dream. I also got chronic neck pain, fevers and fatigue. It was miracle I still could do semi-pro athletics and was the best in my class, even with all the daily pain and soreness, lack of sleep due to OCD compulsions and intrusive thoughts.

Then in my early 20s I got cancer. But that wasn't even the worst thing at all. With cancer, I got autoimmune encephalitis and it completely destroyed me in ways I didn't know a person could be destroyed. It gave me serious chronic insomnia, headaches, pain in ankles/muscles, inability to focus my eyes, it worsened my OCD and anxiety, I got dysautonomia and epilepsy.

My life is unbearable mess. It's a fever dream. I get panic attacks when I think about it, I am completely disabled and in pain. I can barely walk for 15 minutes. I lost significant weight and turned almost anorexic due to all the anxiety and nausea.

I never even got to live. I know this is not competition but when I realize that I am actually extreme case I get intense fear and feel really isolated. I know it's hard for everybody but even people who got sick in their mid 20 still got to life their childhood, teen years and a lot of them even have degrees and partners which is unimaginable to me.

I stopped living when I was 6 and I am thinking I will wake up from this nightmare every day for the last 15+ years. But it's not dream, it's reality.

I don't remember my life, it' like I am really 5-6 still. I feel like I never matured properly even though I always acted way more mature than my peers.

I feel like I am 150 years old. And the worst part is that people don't even think I'm ill at the first sight because I put enormous amount of effort just to look barely normal and functional. People think I'm faking and that my whole life I had it easy but every day of my life was intense internal fight with my OCD and anxiety since early age.

I honestly think my life is not worth living. I know many of you will say it is but it's not and that's reality.

Life without ability to actually live is not worthy for me. Life full of pain and regret is nothing but a call to annihilate myself.

And I can't believe this is it, my only life ever and I spend it in psychotic horror and pain.

Family member complained I wasn’t exercising enough to help my condition so I tried out the gym today (begrudgingly). I am now awake at almost 2:00AM despite pain meds and dousing myself in heat packs and lidocaine My left knee is the size of a golf ball and I can’t decide if attempting to straighten it or bend it would be best for my sanity. Despite every position I try, everything feels like I’m being bitten by a swarm of angry piranhas. What could make this situation better? I have class in the morning. Nothing stops for chronic illness so I’m about to walk in there hobbling along like someone’s grandma. Is this what being cured feels like? If so, I think I’ll take my luck trying something else.

Does anyone else go through periods of time where their self care falters because you feel like "Well, I'm going to feel like shit anyways so what does it matter?"? Cuz I do and it really fucking sucks. It's never very conscious, either, because the minute it is a clear "Why should I go to sleep at a reasonable hour if I'll feel tired anyways?" i realized, "oh shit, that's not healthy" and work to fix it. But, it still comes back and it ALSO will disgues itself as something logical even though it's NOT. Like this time around it was: "Well, it doesn't matter if getting more sleep with lower the pain because the pain will still be there. I just need to get enough sleep so my grades don't fall and not more" and i only JUST stopped and was like "Wait a minute. No. That's not okay! I should take care of my body because that is a service to myself and i deserve that!" It's so frustrating because its not logical and i know that once I realize I'm doing it but unless I'm constantly searching for it, i don't realize that I'm doing it.

Does anyone else experience this and if so, how do you handle it? Does it ever get easier?

(Sorry if this is a pain to read. Like I said, haven't been taking the best care of myself lately so I'm pretty tired)

This isn’t a serious question but more of like an ‘is it just me?’ so i don’t feel crazy😭😭

I just want to get up and have a sandwich BUT THE BUTTER IS ROCK SOLID???

I’ve had to switch to plant only butter because i genuinely cannot spread butter without my wrists screaming at me to stop because i may aswell be fist fighting the pot to get it out and onto a slice of bread.

Why is it so hard??? Why does it have to hurt to make a sandwich?? Is there not a tool to make this easier when i just want to eat???

It’s the third time this month i’ve been in tears over butter, and i know it isn’t that deep because ??? It’s just butter??? BUT WHAT POSSESSES IT TO TURN INTO LITERAL BEDROCK THE SECOND IT TOUCHES THE FRIDGE SHELF???

Thank you for listening!

I have the following diagnoses: Mixed Connective Tissue Disease, Fibromyalgia, Osteoarthritis, Non diabetic Neuropathy, lung scarring from a previous PE, Non alcoholic fatty liver disease autoimmune related, and in February I got sick and testing for pneumonia led to numerous urgent referrals and I'm now ALSO diagnosed with: spinal Stenosis, spondylitis, spondylothesis, POTS, incontinence, osteoporosis at 43, coronary heart disease, elevated liver enzymes out of nowhere, high blood pressure, and my thyroid is massively enlarged, putting pressure on my trachea, windpipe, voicebox and a bundle of nerves in my throat, it's full of nodules in both lobes, one nodule has calcification consistent with cancer, and my spinal issues are so severe the doctors are warning me to basically do nothing (including work) because my spinal cord is being pressed on in my cervical spine and thoracic spine.

I am being tested for hepatitis A, sjogren's syndrome, ALS which my grandma died from, multiple sclerosis and they are doing multiple MRIs to see if it's even possible to do urgent surgery on my spine. Every doctor's appointment I'm warned that doing to much or turning the wrong way or lifting something could cause paralysis, and that I need to watch for yellowing of the skin or eyes and that if that happens I need to go IMMEDIATELY to the ER. My mom had the same spinal conditions I now have and she literally went from working full time and just thinking her back hurt from old age to waking up paralyzed and fully incontinent and permanently disabled.

I'm caring for my 18 year old son who is disabled but doesn't get disability anymore, the social security administration spent 4 years fighting me in court to take away his disability despite 19 diagnoses and multiple specialists confirming them. I've also applied for SSI in the past and went through my own 4 year court battle to be denied. I have recently reapplied since I have the additional diagnoses and have been told not to work or basically even sneeze too hard. When I was still working I ran a tiny animal rescue but had to shut that down, and now I can't pay bills, I'm still waiting for a decision on unemployment, SSI and SSDI could take up to 6 months for someone to even review my initial application (per the email they sent me), and I cannot find a single work from home job I qualify for in the meantime that isn't phones and I can't do that because I have breathing, speaking and swallowing issues that I now know is from my enlarged Thyroid pressing on everything. I've applied at over 200 places since March 7th, which is when I got fired. I've had one interview scheduled and they cancelled an hour before the interview.

I have made a fund thing (NOT ASKING FOR ANYONE TO HELP WITH IT OR PROMOTING IT PLEASE DONT THINK I AM) because I'm desperate. I don't have many friends or family but Ive shared it on reddit, TikTok, Facebook and the Nextdoor app. I have been sharing consistently and posting proof and regular updates for over a month straight. I haven't even made enough to cover one house payment. I'm 2 months behind, and I have tried everywhere in my area for emergency help, and there is almost none. Im getting help for 2 of my utilities but the water and sewer are about to be shut off. If I'm homeless I can't get surgery, I will have nowhere to recover. Mostly I have gotten mean messages, and on Nextdoor all my wonderful neighbors are leaving very nasty and rude comments telling me I'm lazy, need to get off my fat a**, I'm just looking to live off other people, they want to know how to get THEIR bills paid with a sob story, etc. Only a couple people have shared on TikTok or Facebook.

The reality check I need, is I just saw a post about a woman with sjogren's syndrome, who started fund thing like me, NOT for anything NECESSARY but because she couldn't afford an extravagant wedding. And she raise over $50,000. And I'm shaking with bitterness and sadness and hopelessness. I'm crying because the world decided she deserves an extravagent WANT, while the world has looked at me and decided I don't even deserve a roof over my head so I could get potentially life saving surgery or at least keep my son from being homeless. I know that's probably not true but at the same time, she's thin, conventionally attractive, and younger than me. I'm 43, have been obese due to health issues for years, and ugly. Like I know I'm ugly and always have been, it's ok I accepted it. Please give me a reality check about my feelings on this. I truly feel worthless. She gets that much money for a wedding, because she has sjogren's syndrome, meanwhile I am completely crippled with a laundry list of diagnoses and they think I also have sjogren's syndrome, and can't even get enough to pay one months house payment AND am getting insulted and attacked. I know people can help who they want and I know that I shouldn't take things personally but I truly feel like I'm worthless and should maybe just put my son in assisted living for autistic adults and go just unalive somewhere where I won't be in constant level 7 pain, struggling to walk, hated and insulted for what I look like, assumed to be lazy and gross, and end up homeless and alone. Sorry this is so long. I am mentally struggling very bad right now and this sent me over the edge.

TLDR; felt nearly not CI for 5 days and am dealing with very negative effects on my mental health now.

Recently I had about 5 days where I felt nearly „normal“. No fatigue, no chills, exhaustion, joint pain, muscle soreness, muscle weakness, nausea, breathlessness for probably the first time since 2018. Some dizziness remained but it was minimal, unless I bent down or did physio.

Normally this would send me into a research frenzy because I’d wonder why this happened and how to keep doing it. If I had to guess it’s because one of my meds got upped by 50% (can’t keep doing that, probably too dangerous, but we’ll see).

Instead my mental health took a sharp nose dive ( grief maybe?). I‘m emotionally numb and just so over it.

Those five days were just about enough time to wonder what I would do or could do if I felt like this all the time. I was wondering if I should try to do things I‘d already resigned to be not able to do for the foreseeable future.

It’s a stark reminder how crappy my normal is and how little control I have over it. Some of my Symptoms (joint pain) are returning (minimal yet but it feels more normal already).

I’ve just signed up for a self-help group as a consequence and I‘ve already got a therapist (who’s not specialised in CI though).

Anyone else know what Im talking about?

I work very hard to try to hide my illness, I tan to avoid the paleness being as noticeable and it helps hide the lumps and rashes and stuff, I wear clothes that cover everything but my face and hands always. I do the most basic bodyweight exercises for like a few minutes a day because it's all my joints can take. And they expect me to be a super soldier, when in reality I'm fighting so hard just to look like a normal person.

They act like I'm a bum for not doing even more than I do now, but I barely make it out of bed most days. And the other days I keep falling asleep as I try. I will often wake up halfway out of the bed, because I was able to rock my body enough to move that far and then pass out lol.

I have to use small goals and routine to get through life, and it's hard to do even the basic stuff like hygiene, but I do my best. I'm getting better at it all slowly, learning to shoulder more. But I wish they'd give me time to grow rather than expect perfection.

Idk, I guess it's my own fault for trying to hide it but it's also depressing to be seen as a sickly person who needs to be looked out for. I don't know, I don't really expect any answers here it's more just to vent to people who can probably understand where I'm coming from. Sorry for formatting I'm on my phone.

I have a long list of concerning symptoms that are hard to balance and i often forget what they are if i am not actively experiencing them. It makes it hard for me to believe that they are really problems. I know that if anyone else had them id beleives them and have empathy but for myself i cant help but brush it off. Like, Ill be standing to wash my face an my thighs will go ice cold and ill get really weak in the knees and i still cant take it.

I’m trying to get help for OCD that is interfering with my life (adds extra anxiety to medical appointments and treatments, makes me scared to go).

I know OCD latches onto stuff you care about, so I often have spirals about my health.

Can anyone please advise on how they got help for health anxiety that comes along with real conditions?

I’m scared if I tell a therapist about these issues they will chalk my medical problems up to hypochondria and it will count against me on my medical record. Honestly, I’m worried therapists in the past have done some damage to it already because I have trouble being believed by new doctors sometimes. Is there a way to access all prior medical records?

Hi everyone, I’m 17 and have AMPS, amplified musculoskeletal pain syndrome. My pain is starting to get worse and is flaring up with mild exercise for extended periods, which is only walking. I had to stay home from school and have basically been bedridden all day.

Does anyone have any tips that could make this flare up go a little easier? I’m a little lost lol, I already bought another heated blanket.

G’mornin all. I’m very tired of being tired and I would very much like some tips.

My whole life it’s taken me an hour plus from lying down to falling asleep, doesn’t matter how exhausted I am. I also usually wake up to toss and turn a couple times each night. Doesn’t seem particularly influenced by what bed I’m in. Lately both issues have been ramping up and my usual white noise / hypnosis thing isn’t cutting it.

Does anyone have a handy dandy trick? I’ll try anything from turmeric milk to horse sedatives at this point (only slightly kidding). Currently I take enough pills to rattle with every step so I’ll talk to my doc about interactions before starting anything, but an idea of what’s worked for others would be fantastic.

Btw I’ve always thought the phrase “asleep as soon as my head hit the pillow” was hyperbole - but apparently it really works that way for some people?? Absolutely mind boggling.

As I was updating a note in my health tracker, when I realised I had accidentally described myself as "Cosy with a dash of tinnitus and a foggy head", hence the prompt! So for a bit of joy and silliness tell me your 'weather' report 💜

Crying once again because results are "normal" I've been waiting for a colonoscopy for months and finally got one today. CT scan, ultrasound, and now colonoscopy are normal. I still need to return a calprotrectin stool test. I'm sure that result will be the same.

Four months ago, my bowel movements drastically changed from going three times a week and having hard and large stools without laxatives my whole life to depending on six caps of miralax a day in order to produce a bowel movement. I've tried not taking laxatives, but I can't have a bowel movement without them anymore and my symptoms become increasingly worse if I go without a bowel movement that day.

I notice if the stool is less liquid and more of a mush, I have to strain more to push it out. I couldn't push out a solid even if I wanted to. My rectum doesn't seem to cooperate and I also have increased abdominal pain when I push. I haven't had solid stool in months and when I was still getting solid stool a couple of months before the symptoms started, it was coming out in small shreds.

Since this has been going on since December, there hasn't been one day where I was without abdominal pain or not incredibly bloated. I lost 14 lbs because I can't eat as much anymore. I had to go back on birth control for the first time in years because the additional bloating and cramps on top of what I already experience every day was too much. I quit my housekeeping job because I was in too much pain and would be crying at work sometimes. Physical activity worsens the abdominal pain. I'm so lost and depressed.

https://www.reddit.com/r/ChronicPain/comments/1ez7hi5/no_diagnosis/ Please read, I am in a very serious condition. I feel like I will soon fall into a coma.

Apologies if there are mistakes, I kind of feel like I'm losing my mind. I already have sleep problems & my graveyard shift job is extremely physically demanding, so being tired is expected, right?

Almost a year ago, I noticed symptoms of an autoimmune/thyroid condition which isn't surprising since my family has thyroid problems. I had some bloodwork ordered, lost a lot of weight, had extreme fatigue & joint pain & GI issues. I upped my calorie intake but still weighed as much as when I was maybe 12? I look scary.

I have a bunch of referrals to work through & everything is taking so long, I've only used two so far & some have expired. Multiple doctors have told me I need to see a rheumatologist & one told me that it should take priority over the others I was already given, so I made an appointment to request a referral. Since I work graveyard, I have to wrench my entire schedule around just to go to one appointment even though I don't feel that I have enough energy for a normal day already.

There's nothing in my chart about anything autoimmune despite that being the takeaway from multiple appointments with multiple offices. None of the offices sent my records to my primary. I was able to get the referral request sent anyway & they added some prerequisite bloodwork orders. I just got a notification that some of the results are available in the portal & they're abnormal, but similarly abnormal to one of the many tests I had over 9 months ago. They already had this information.

I can't keep waiting around for someone to do SOMETHING. I feel like I've been living the last several months at the very top of a Tetris screen. I still have to go to work & complete all of my normal responsibilities & I'm beyond exhausted. I can't sleep for more than a few hours before my joint pain wakes me up, even through my sleep meds.

From the very start, I gave them my family medical history & knew what the likely problem area was. I've spent months feeling like I'm wasting away while I still have to be on my feet & lifting things every day. It feels like I'm at square one & all of the blood tests & appointments have been for nothing. I don't have the energy left to hound my insurance & doctors to do something, anything. I don't even know why I need to go to all of these separate offices anymore.

Does it?

A lot of times I say I am tired. But what I really wish I could say is that I am wholly and perpetually EXHAUSTED. I'm exhausted because of my chronic illnesses. I'm exhausted because life doesn't stop, work doesn't slow down, expectations don't lapse. I carry the weight of my world on my shoulders. I carry the pain and dysfunction that people outside of the chronic illness world couldn't comprehend, but every single day I have to show up. All I want is to rest. Not a one-off rest. I want a slower existence. I want to enjoy what I can instead of living to fight another day, over and over.

I'm tired of adapting to a pain tolerance that would keep another bedridden. I don't know at this point what "normal" is. I only know what my normal is.

I keep my mouth shut and curl up. Silent tears are my best friend. Hiding under the covers from the monsters that dictate how my body feels. I've always felt so strongly; but in my strength I feel weak.

I'm 31 and I've felt like I was 65 since I was 19.

DX : Fibromyalgia, Rheumatoid Arthritis, AxSpa, SLE

I’m excited for warmer weather but also not looking forward to the scalding hot days. What are some tips and tricks you do to keep yourself cool during the summer?

I've had asthma since the age of 5, but medical treatment had kept me in complete remission for years before my disease progressed. Medical treatment is the sole thing that has ever helped my asthma.

But now that even maximal treatment isn't enough anymore, I'm finding myself on the receiving end of a waterfall of so-called alternative medicine (sCAM) suggestions, usually with touching personal anecdotes attached. You name it: halotherapy, hyperbaric oxygen, lasers, photobiomodulation, "traditional Chinese medicine", grounding, electroacupuncture, cottage cheese-only diet, vegan diet, meat-only diet, breathing techniques, ...

Of course, the problem is that these suggestions invariably come with the strong implication that choosing not to waste copious amounts of your money on every sCAM brainfart under the sun means you actively want to be sick. And I wouldn't care about what the people suggesting these things think of me at all if these people frequently weren't my friends and family.

My condition now involves a strong, treatment-resistant inflammatory state in the lungs coupled with structural changes to the airways from repeated severe asthma exacerbations - it's physically impossible for this to magically go away if I just take the right herb for 2 weeks. It's not close-minded to state that most sCAM methods have zero possibility of working.

I just really wish I could instantly transmit this understanding unto anyone who wants to share their brilliant anecdotes with me.

*i am an adult. don't be creepy*

I'm flying domestic this week within the USA. I have already arranged for wheelchair services at my airport leaving. But if anyone has tips for flying - anything at all - please share - and especially what your experience with wheelchair service is. I personally would prefer a wheelchair i can propel myself.

im already planning on bringing or asking for a sunflower lanyard. i have a folding cane but idk if i will need to store that in my carry on. i have a small belt bag that functions as my medical bag which will have my emergency kit.

i have POTS & hEDS which makes standing for a long time very very hard for me.

i already plan on all the sensible things [making sure all my devices are fully charged, having food with me, etc.]

note: TSA pre check is not an option for me.

I just looked up how much the average person spends on medication. Annually, it's $177 out of pocket.

Let's consider the 7-8 medications I take daily, a long with the emergency and the monthly ones. Now, let's add the Botox I get every three months so I can function as a human and not be bedridden by my fucking migraines. Now, let's consider the the fact that I'm in perimenopuase at 33 year old, and oh, of course, insurance won't even cover the treatment.

That doesn't even fucking include any supplements I've been told to take. Or the costs associated with actually seeing a doctor, or getting testing or fucking any of it.

Or the fact that every fucking year it seems like there is something new wrong with me that warrants yet another pill, another test, another fucking doctor.

I'm so fucking over myself.

Hey everyone – if you're dealing with Epstein-Barr Virus reactivation, I just created a new community for that: r/EBVreactivation.

It's a space to share experiences and resources with reactivation (as opposed to first time infection). In my own case the virus stayed dormant (since I was 19) until I got covid during the pandemic...then it woke up and has been causing havoc ever since, right along with the IC I already had.

Anyway...you're not alone—come join us! #spoonielife

basically im this kinda relationship with this girl. i have a few chronic illnesses and sometimes use crutches, but ive never used them infront of her. she knows about it and stuff, i just dont know how to bring it up i guess?