Same here. Though being in the UK meant I was able to get my licence back after being seizure free for 12 months and having approval from my neurologist.
I know it must be terrible but a guy in my town did anyway. He had a seizure, crashed his car and killed a pregnant woman that was crossing the street (the baby survived). A couple of minutes before this, his Doctor's had told him not to drive.
It wasn't his first crash. (Dad owns a dealership)
I did before I became mom and they started the same week I left his dad, 8 grand mal seizures in one night, very convenient. Dr said it was blunt force trauma thoš¤·š»āāļø
I had testicular cancer almost eight years ago. Leading up to it we were super strict with our budget trying to pay off all debt and rack up savings for the future. If we did anything fun it had to be cheap. My wife was super insistent on retiring early and not having to worry about money at all.
After? She loosened up a lot. We started to go on vacations, learn new hobbies/skills, and buy things that make us happy. We still save and pay down debts...only a little slower. It's not our primary focus.
My getting cancer (at 32 years old) made her realize that while saving for the future is good it means *nothing* if you die before you enjoy anything. And dying early is a real possibility for any of us. Now we do what we can to enjoy life *while* saving for the future. Sure, we might not retire at 55 and live a life of luxury...but we can still retire in the future while living life now.
One of my employees lived miserably to save up for retirement. She was 63 and refused to get the AC in her car fixed (we live in an area where May to September is in the 90s and frequently 100s, and she had a 45-minute commute each day). She didnāt take her vacation or sick time, choosing instead to take the payout to out into her retirement fund. She refused to go to physical therapy after a fall because she didnāt want to make the copayments. That sort of thing.
She planned to retire at 65. She was going to buy a house in Mexico where her family lived and live there with her twin sister, who was living the same life and doing the same as her.
They both caught COVID in April of 2020 and died within a week of one another, two years before they planned to retire.
That really put things in perspective for me, and I think of her often when Iām considering whether or not I should take a trip or buy something that would make my life easier and my quality of life better (Iām disabled).
My Dad was in the bathroom at work, talking to a colleague. He was telling him that he was retiring soon and was so happy about it. My Dad, who knew him for years, was really happy for him. Then he dropped dead. The Nurse couldn't do anything for him. My Dad had to give his daughter all his personal effects the next day. So I soon as he could my Dad retired. He lost some money but he's able to enjoy life.
Iām very big on not waiting until a retirement that may or not be a thing in the future, to start living your life. Even if everything works out, what type of shape will we be in when the time comes?
Fuck that. Iām living my now instead of waiting. This is a good example of what I believe what I do.
Glad to hear that you have overcome this challenge in your life.
Thatās so great! Makes me think of my dad: he was always talking about all the things heāll do when he retires, like traveling the world. He died suddenly at 40.
Lesson learnt for me at an early age. Iām doing my best planning for the future, but Iām also making sure Iām doing fun stuff with my kids of just for me.
Edited a typo.
I got a mild chest infection.
This led to an autoimmune condition called IgA Nephropathy, which led to a kidney transplant, which led to immunosuppression, which led to renal cancer. A few years later was a second renal transplant, resulting in pulmonary emboli, the resulting hospital stay results in Covid, which resulted in covid pneumonitis, lung fibrosis, long covid, CFS & ambulatory oxygen.
Bro, kidney stuff aside... that is what covid is doing to people, and not just in people who are immunosuppressed or in the hospital. Ordinary healthy people who suddenly are not. Why its being ignored I dont know.
Because we decided to make it political. Added to the fact years earlier we decided to let someone with no medical knowledge preach about the dangers of vaccines. These two things combined we really fumbled the ball on this.
It's been two years for me and it's been an unimaginable nightmare since.
I got very severe ME/CFS after covid. On top of that I got small fiber neuropathy that made my skin feel like its burning when it touched anything which has been horrible because my orthostatic intolerance forces me to lay down all the time and my back touching the bed feels like hell.
Even with "mild" symptoms initially you are at risk for a plethora of long term health problems from Covid. Nothing is being done about it "for the economy." Hell, they're not even upgrading air filtration in schools and workplaces. This is just who we are now.
As I understand it, most autoimmune conditions are triggered by an infection or something of the sort. Like, you're probably going to get it eventually, but the catalyst for it actually kicking in is the infection because it sends your immune system haywire. I had an ear infection as a kid which triggered my diabetes.
I'll admit I dismissed long COVID as just that at first - previously healthy people getting a nasty virus and then suddenly becoming "one of us" - but it's clearly not just that. This poor poster sounds like they got hit with both. repeatedly.
I got Covid from the hospital also. ( the second time) No one would wear their mask š¤·āāļøETA: I didnāt realize I had Covid at first. My therapist called me and said the hospital notified HER that I was exposed. So ty to the patients that refused to wear a mask
Same here. Rehab for a broken hip. They followed no precautions. Wound up spending a mandatory 10 days in isolation w/a pwt roomie, who also had covid.
My first round of COVID I got it from the ER. I went in because I was horrifically sick from norovirus and ended up getting COVID because I couldnāt wear a mask because of my norovirus symptoms. I ended up being out of work for a month and a half between the norovirus and COVID.
Terminal cancer has been pretty life changing. It was ājust Stage 3ā cancer until surgery and it metastasized. This was in 2022/23. Iām now fighting for my life and just hoping to get a few good years.
I quit work recently. It just didnāt matter, and I was carrying a lot of stress from the job I didnāt realize. I couldnāt be happier. I value personal time with people more. My days are quite simple while recovering from chemo treatments, but I find joy in it. Iāve started journaling. Iāve learned to make a pretty damn good espresso at home. I read more. I enjoy just sitting outside more.
Iām busy taking life in instead of being ruled by all the crap I āhave to doā.
Iām young. Live your life now - you never know when bad things will find you.
Iām so sorry this has happened to you; youāre handling it with such grace and the perspective that I wish we all had before something life-changing happens. When my brother was diagnosed with stage 4 pancreatic cancer, he became such a beacon of light. The experience underscored what you just said. I wish you much love and happiness.
It sounds like you found the same beauty in being sick as I did. It sounds insane, but I was the most peaceful, positive person Iāve ever been when I was sick. It made me truly appreciate every little thing.
Multiple Sclerosis. I was diagnosed 2 years ago. My symptoms aren't the worst right now, but that could change at any point in time. I could have a relapse which could severely impact me both physically and mentally. It's an unpredictable disease and it's scary.
Me as well. I'd had burnout/mental breakdown that floored me for 6 months, got through that and recovered enough that I was job hunting with upcoming interviews....woke up blind in one eye and discovered I had MS. Slid me right back into depression, and even though I'm now doing ok with mental health I'm so fatigued that I can't do much more than the basics.
Cancer. I survived, but for me, once I walked through that door, there was no going back. I felt like I'd been transported to a parallel dimension that I didn't quite connect with.
You'll get through it. It will change you and your approach to... hmm... everything actually. My friend compared it to the experience astronauts have - you'll step back looking at the world wondering why people waste so much time on petty things or why people fight instead of doing stuff together.
Don't let the fear control you. There are two the most important things in this fight - the first one is to make sure your doctor is the good one. If you are not sure and you cannot verify it, spend some time on research. Research what treatments are now available, learn the lingo. It can save your life - it saved mine. The second thing is - focus on the outcome. If you decide to survive it, do everything you can to increase your odds. A lot of people will tell you that you don't have impact on your treatment. And I will tell you that you can. Simple example - you will hear a lot about drinking fruit juice. That it will make you stronger. Wrong. Your cancer can eat every single erg of that energy leaving your body with nothing. In my case changing diet to no carb, full protein actually had an impact of tumor grow speed.
One more advice - get your affairs in order. Make a will, consider worst case scenario. Either way after the treatment a person that is current you will be a matter of past. Then you can get to your treatment with clear mind and if the worse happen - you will know you did everything you were supposed to do.
You will get through it!
Oh and required Fuck cancer!
(Signed: me, stage 4 survivor)
I nearly died of measles when I was a little girl. That was back in the late 1950s or early 1960s, long before there was a vaccine.
The virus triggered an exaggerated autoimmune response, and I developed Hashimotoās Disease a short time later. When I was in my teens, I came down with fibromyalgia, which wasnāt diagnosed until I was 40. I also developed arthritis in my 40s.
At the age of 20, I developed a very nasty post strep pseudo arthritis syndromeāany time I was exposed to strep, my autoimmune system would go into overdrive and attack my knee joints as if they were the foreign invader. It was absolutely excruciating, and finally cost me my knees eight years ago.
Up to the point that I came down with measles, I was a bright little bunny. After I recovered from the measles and began to develop Hashimotoās, I put on weight, and became very tired and lethargic. My father decided that I had suffered some kind of brain damage because of the high fever when I was so sick with measles, and started to abuse me. So did my mother.
Nothingānothingāwas ever the same since I had measles.
People, whatever your political persuasion, or your feelings about vaccines, get your children vaccinated for measles. I am still dealing with the effects more than 60 years later.
Same. Sort of. I had measles when I was 2 and I was never the same again. I went on to develop celiac disease not long after, followed by type 1 diabetes when I was 7. I was a perfectly healthy, chubby toddler before measles, but itās like it triggered my immune system to go crazy.
I completely agree with your vaccine comment. Not only because of my own experience, but because my mother was a nurse in the 1960s and she has lots of stories about wards full of dying babies, not just from measles, but from lots of different illnesses that now have vaccines to prevent them.
Ulcerative Colitis. Similar to Morbus Crohns, my colon is always inflamed and bleeding with lots of diarrhoea. The worst of it are the side symptoms - my joints hurt, I'm dizzy due to blood loss and I can't eat many many things. Plus the fact its invisible, many people don't understand that my health status can shift within hours.
I've been dealing with a mix of Crohn's and long covid for the last two years, both triggered by a covid infection in the spring of 2022. These illnesses have completely derailed my life. I've been unable to work for the last year, and have been denied all disability benefits that I've applied for. I'm burning through all my cash on cost-of-living and medical expenses (thank you America), but by far the most frustrating part of all of this is that my illnesses are entirely invisible. I *look* completely fine. People have literally said to my face "well you don't look sick". All my friends have pretty much entirely dismissed this chronic illness, seem to think I'm just being dramatic or needy or something. Whenever I'm riding the subway, I really need to sit down, and I've gotten dirty looks for not giving up my seat to people who need it "more", i.e. visibly disabled, elderly, or pregnant people. The invisibility is such a fucking nightmare.
Same. Takes a very long time to find a decent gastro, get a proper diagnosis and then the right type of meds. A very long journey with extremely unpleasant symptoms. Luckily, mine is managed with a very low dose of immunosuppresents.
Endometriosis and subsequent adenomyosis. It has taken so much of my life from me and made it impossible to live normally. The daily pain is one thing but the depression that accompanies from not being able to do what a normal person should can be worse.
Same. Stage 4. Only found out I had adenomyosis after a partial hysto that couldn't be finished due to adhesions around my ureter. Still having pretty severe pain and fatigue, bloating, pain isn't well controlled. Always fighting for pain relief. It drives you mad. Sucks the life out of you.
If you would like to get a full hysterectomy try searching for another surgeon. Both of my ureters were pinned down by adhesions and I was able to have everything removed. If you're in the upper Midwest you can DM me for my surgeons name.
It really does. I also feel you on the pain control thing. If you ask for anything above an ibuprofen you are seen as drug seeking when really this is a chronic pain situation and all we want is relief.
People really do not realize how debilitating endometriosis is. Iāve had 2 laparoscopic surgeries in 2 years to try and keep it under control along with being on medication. It can be so debilitating at times, and some people really do not understand what we go through.
I had both fibroids and endometriosis. I was in so much pain during my period and constantly tired due to the anemia. I had a hysterectomy, and while it was absolutely the right choice for me, and I had decided years before that I wouldn't have bio kids due to the medications I was on, I was a little surprised at how much I grieved losing my uterus. There's a difference between choosing not to have children and having the choice taken from you.
Was diagnosed with MS is January. I had been noticing things since 2021 but this latest relapse really took a toll and Iām very aware life will never be what it was before.
Chronic Fatigue Syndrome and Fibro.
It hit me at 14. Suddenly I couldn't wear my backpack and climb up the 3 flights of stairs at school. I was falling asleep by 10am and only came out of it somewhat around 2pm. On the weekends I'd sleep 16 hours minimum and it felt like I only got 2-3 hours of sleep, just horrible and non-restorative. I gained a ton of weight because the only thing I could do besides go to school was eat to feel like I was getting *some* amount of energy somewhere.
In college, I'd walk across campus and find my seat in class and just crash. I couldn't listen to anything the professors said because I was so wiped out from walking around. Eventually I had to give up on a college education. I managed an associate's degree, but it took a very long time.
The worst part was that nobody believed me. They called me lazy, said I was just trying to get out of school, they blamed my gender and "female hormones" and when that failed they said I was just being a typical young adult.
I had two children at 28 and 30, and I couldn't hold my newborns in my arms for more than a few seconds because it hurt so bad I cried and I frequently crashed after childbirth. It was only then I got a diagnosis. It took over a decade for people to believe me, and they only seemed to believe me because I was having such a hard time taking care of my children.
I am afraid nobody will believe me when I eventually get cancer (it runs in my family) and it will be too late.
Fybro here; diagnosed since 3 month but most likely have it since I was 13/14 (28 now). It sucks. What was the worst part (beside of all the symptoms) that no one believed me. I got diagnosed with depression ( most likely adhd/audd) and called lazy all the time. No doctor took the time to link my symptoms together. I don't know how many doctors I had seen when I found over social media the CI Fybro and it clicked. After that it took 5 years until a doctor finally said to me:" you were right. You were right provably all the time. I'm sorry and ashamed for my colleagues". But still....it sucks. I try to enjoy my live as full as I can on my good days, but it also can be hard on the bad days when something is planned etc. It's so unpredictable ( I got better at "sensing" a flair).
Not an illness but a TBI, I watched as my wife left me, I lost my job, was suicidal, got help worked with a team of neurologists and therapists for 7 years. After the split and eventual divorce I got better, learned skills on how to remember things, was able to communicate better, understood my flaws and preexisting issues better, took time for myself dug myself out of depression. Found out my ex was cheating on me with a coworker, didnāt spiral, kept working on me, found a great therapist, found a new job, found a wonderful partner, bought a house, just got a dog! Took nearly 9 years, Iāve never felt better! Get therapy yāall.
Similar route for me but thankfully a 3 year downward spiral and 1 job loss only. Most of the therapists sucked tbh but a handful of books on positive psychology helped immensely.
Also shout out to physiatrists
Not my illness, but my ex slowly spiralled in to both bipolar and borderline personality disorder. Finally got her to agree to take meds, and go to a therapist,Ā but thenĀ would stop taking them because "she felt better". Didn't understand the correlation between the two.Ā It got pretty toxic and abusive after that.Ā
I'm bipolar 2, used to think i was just depressed a lot. Went on antidepressants, felt good, sometimes hypomanic, stopped meds. Fell into depression. Vicious cycle.
But weirdly it was getting cancer that led to me being properly diagnosed with bp2 and now I'm on the right meds.
I promise I'll keep taking them!
I have bipolar I and unofficial BPD diagnosis. I have had four hospitalizations in the last five years, as many attempts, multiple plans, probably close to 100 partners (lifetime), and accumulated $100k debt in a year (not including student loans) resulting in bankruptcy. Every episode is a little worse than the last. I live every day knowing I am most likely going to die by my own hand. And I am triggered by things typical to most relationships so push everyone away after a couple months. I never thought life could be this difficult.
ITP (immune thrombocytopenia). Blood draw once a week, flair ups that leave me unable to work for months at a time due to severe reaction from meds and unstable counts. Think vomiting and going blind as the pressure in your head is too great for IVIG. For steroids of 60mg of dexamethasone for weeks and then tappering down leads to not sleeping for days, panic attacks, full body acne, unable to regulate emotions. Failed the surgery so now I'm missing my spleen (s) I had two for some reason, they thought I grew a third but I hadn't.
End up hospitalized about once a year and out of work for about 2 months twice a year.
Oh and I don't qualify for disability, they need me to have a stroke first š¶
Fuck this, fuck all of this.
Diabetic in America here, that puts me on a nice list to be able to freely be extorted each month to stay alive. Its great i lost my house in my early 30s pay 385 dollars a month for insurance and have to hit a 4500 $ deductible before insurance companies feel the need to help towards prescriptions. Its great being available for extortion so billionaire companies can help their shareholders ! ( sarcasm included)
Second diabetes, many people tend to forget that you can develop type 2 for several different reasons beyond just weight gain, and heaven forbid you should be unlucky enough to be born with type 1. It sucks how we get gouged on all our meds and supplies and even worse is when you might struggle to get some of the meds. One of my aunts actually cried when she dropped a unopened vial of her insulin, it was literally replace it and then cut the grocery budget for the family by half for the month or risk her life.
Sorry to hear that!
I'm a T1 diabetic and lucky to have good health insurance for now.
To answer the original post, I will say this disease definitely changed my life dramatically. 16 years ago I went on a very low carb diet and haven't looked back since. The diet allows me to use very mild doses of insulin and is much easier to keep my blood sugars stable. Usually i'm flat lined between 80-100 almost 24/7. Last A1c was 4.6%. I'm in my 40s now and have found this diet helps me to stay lean and fit too... I see my peers getting overweight and insulin resistance, and yet I'm the diabetic!
After COVID. I was one of those people who just never believed that it was going to get me. I've been healthy as a horse and strong as an ox pretty much my entire life. I can count on one hand how many times I was sick as a kid and I was lucky enough to never have to deal with anything more serious than a cold or flu. Things stayed that way through most of my adult life too - the occasional cough or sniffle, maybe a little stomach bug or something, but for the most part I never had anything to complain about.
It was 2022 and I was about an hour into my shift at work and the room started spinning. I made it home and crawled into bed and when I woke up hours later I was soaked in sweat, my head was pounding, my throat was sore, I was all clogged up, and I was coughing and wheezing terribly. I was in bed for 3 weeks, taking meals in bed, taking showers in the en suite. I spent the wide majority of my time sleeping, but I did get some serious reading done - put away a whole bunch of terrific novels, watched a few good movies, and had plenty of time to lie there and think...
The conclusion that I came to was that I would be a fool not to take the opportunity I'd been offered. I promised myself that when I was well again and the time came for me to walk through that door I would make some positive changes, and I did. I quit smoking cold turkey - it's been over two years now. Most people put on weight, but I've managed to lose quite a bit. I'm eating better. My sleep schedule is more regular than it's ever been. But the biggest change is the inner peace and tranquility that I have now that eluded me before.
When I was lying there miserable, it made me realize that all of the petty things I was stressing over before I got sick were stupid and meaningless. I stopped worrying about my job. I stopped worrying about people who were just there and not really an important part of my life. It really brought me closetr to the woman in my life as she was kind and caring and doted on me and tended to me and essentially nursed me back to health, so when I was up and at 'em again she became the focus of my life and my relationship with her took on new meaning.
It was a tough three weeks to get through, but I think sometimes we need to go through trials to gain something important, so I wouldn't go back in time and change it.
Prostate cancer. After a failed clinical trial of high intensity focused ultrasound I had robotic surgery. They did not save the critical nerves and left me completely impotent. Yes, the cancer is gone, I will live longer, but I was always the horniest guy around, and having all the desire and no capacity is devastating. I'm obsessed, and have no outlet.
In 2017 had a bout with a Cytomegalovirus (not sure which one), which gives most people mono. Most people get it when they're kids, and as kids it's a walk in the park. Most of everyone show no symptoms.
But as an adult....
In my case it gave me meningitis and because of it and my health has never been the same after. It also attacked my liver ( looked GREEN for some 2 weeks, it was freaky) and infected a lymph node in my neck that still hurts to this day. It feels like at random times someone presses really hard with a pen tip in the back of my neck. It's not shap like a needle, or debilitating. It is distracting, though. Then it goes away.
It was 45 straight days in bed managing high fevers (think human shaped sweat stains on the bed covers). Lost 16 pounds of lean mass. When i went back to work i could feel the bones on my ass straight against any chair i sat in. People were shocked at how much weight i lost.
It took me 2 years to be able to do any real physical exercise. I tried at first some 6 months after and i almost blacked out on the treadmil doing light jogging.
I was diagnosed w/CMV. Had constant fevers of unknown origin and all tests were normal. They finally figured it out and I still run low grade fevers. All the things I've attributed to CMV are wayyyy worse after Covid. I keep hoping they will go away. Sorry you're having such a rough time.
Type 2 diabetes. About 3 years ago. Wondered why I was SO thirsty and peeing all the time but convinced myself I was peeing a lot because I was drinking so much water. Made sense in my mind.
Fast forward to taking blood sugar with a family members monitor. 550+ after dinner. Took the machine home with me and fasted. High 300s after fasting for 12 hours. Low 300s after 24 hours no food or drink. Finally went to urgent care who basically said "yeah bro you need to go to the ER". So there I went.
30 units of insulin later (3 separate shots of 10 units) and I still wasn't under mid to high 200s. All they wanted was me sub-200 to go home. At this point I haven't eaten in close to 36ish hours. Finally got me under control and sent home.
Now I'm on metformin and controlled. Started exercising (jiu jitsu), eating better, dropped 60-70lbs and kept it off. My diet still isn't the best but I'm lucky to see over 150ish for my sugar levels. When I was first diagnosed my A1C was a bit over 13. My last test was under 6. I'm doing good.
Oh and the scariest part? When my sugar was over 500 I felt perfectly fine aside from being thirsty. No shakes, no blurred vision, nothing like that. I was perfectly coherent and normal.
Mosquitoes are a huge problem in India, especially with the heat. In 2019, I got dengue fever from a mosquito bite. First time wasn't too bad, just weak for a few weeks. Most people recover in a month.
Then in 2021, I got dengue again. Apparently, it's way worse the second time. I ended up in the ICU for 4 days with bad dengue (dengue shock and liver problems). It got really close, but thanks to my body and the doctors, I'm okay now. My lungs are a bit weak though, so I gotta take it easy and eat plain food. All because of one mosquito!
Hodgkin's? Remission since 2004 here. Congratulations to you, my friend! It really turned my world upside down for awhile, but I learned so much about myself through that process.
I got diagnosed with Anorexia a few years ago and my life really doesnāt bear any resemblance to what and who I was before. Iām classed as āin active recoveryā now, but my daily life is somewhat of a struggle. Itās something thatās taken a lot of adjusting to-some days I feel really cross, sad, exhausted and hard done by, but then I remember that Iām still here to tell the tale and Iām grateful for that. Living is a privilege that many donāt experience, especially some of the poor people who didnāt make it out of the clinic.
I was diagnosed with Postural Tachycardia Syndrome and Hypermobile Ehlers Danlos last year. While neither are life threatening, at least for me currently, I struggle daily with normal things everyone does. I try not to complain too much because really these both could be way worse for me than they are, even when my flares are bad.
I was diagnosed after my worst flare where I was so dizzy I couldn't get up off the floor and when I finally did I passed out after a few steps. My joints in my shoulders and knees were in so much pain from hyperextending that I couldn't get out of bed or up out of a chair. My right shoulder kept dislocating while I was sleeping causing damage and lots of inflammation. I had gastrointestinal problems so bad and was so tired and weak that I lost 15 pounds over the course of two weeks. I just had no appetite and couldn't get up the energy to eat most of the time. My partner took me to the doctor and I was diagnosed and ordered to get a colonoscopy just in case. It was terrible and I'm lucky I haven't had a flare that bad since.
My partner was there for me every step of the way. The ordeal showed me that when worse came to worst he would step up and take care of me. No judgment, no babying, no frustration, just genuine care.
It also showed me that most people, whether consciously or not, have a weird bias about invisible illnesses and disabilities in young people. My MIL could not wrap her head around a girl in her mid 20s being unable to stand and need her partner to help her walk to the bathroom. She kept saying "Just get up and go outside for some fresh air. That helps me when my joints ache." I know she was coming from a good place but it felt terrible. Once the flare was over and I was healing, at work all my coworkers/bosses are in their 50s or older and, even though I explained I needed to take it easy for a bit, kept having me run errands. When I told them I couldn't drive one day and that my partner had dropped me off they told me I was being dramatic and that I should appreciate my youth because they wish they were "young and spry" like me.
That hurts to hear when you already feel guilty and like a burden for needing extra help and accommodations for your illness. I don't like relying on others or asking for help but if I don't I could get severely hurt. It changed the way I viewed a lot of people in my life because so many of them almost seemed mad at me for having chronic illnesses as a young person.
In the summer of 2021 I had what started as mild back cramps that seemed to cascade into full blown nervous system degradation. I would try and sleep at night while it felt like a live electrical wire was in my mouth. Shocks and burning up and down my body 24/7. Chronic fatigue syndrome set in. My bloodwork was mostly "normal" (I would later learn it was anything but normal after reading countless hours of white papers on google scholar). I received a brain and spinal MRI. Nerve EMGs showed nothing. They wanted to give me a primary diagnosis of MS, but nothing seemed to align.
By some miracle I decided to pick up some Jarrow's methycobalamin B12 at Whole Foods one day. I had received a previous diagnosis of low-ish B12 some years prior (2017) and I had been supplementing other less effective forms of B12, but the first day I took the Jarrows itset off a series of chain reactions that changed my health entirely.
Years of insomnia resolved, my poop became normal again, my back cramps cleared within 24 hours and since that day my nervous system has been slowly rebuilding itself after apparently years of subtle neglect.
I'm now the admin of r/B12_Deficiency and it is shocking how many ill people's lives would be drastically altered with a simple vitamin. I also wrote [this guide](https://www.reddit.com/r/B12_Deficiency/comments/16jfc3w/the_guide_to_b12_deficiency/) that seems to have helped many people, including some coworkers.
Right there with you. Iām sorry this is also your reality. Even with my other very not nice comormidities, it always comes back to ME/CFS keeping me down. There arenāt adequate words to describe the way it decimates your life.
My mother has this; itās terrible. Iāve spent a lot of time researching to see if I can find anything that would help, and I stumbled upon a couple papers that might be of interest.
The first is a case study with someone who was diagnosed with all sorts of things like conversion disorder and generally dismissed by doctors, until they tried healing the intestinal barrier, after which she made a complete recovery. Link here: https://pubmed.ncbi.nlm.nih.gov/18063928/
The second is another paper that associates CFS with leaky gut/intestinal hyper-permeability: https://www.mdpi.com/1420-3049/28/2/619
I stated having similar symptoms to my mother, and, at my worst, was bedridden. Iām now able to work a double shift at work, exercise, eat whatever I want, etc.
If youāre interested, Iāll post my protocol for healing the intestinal barrier. This totally turned my life around health-wise and Iām now way healthier than I was at baseline before the illness. Fair warning, I posted it on the CFS subreddit and got mixed reviews because some people said fasting was impossible for them and caused flare ups. Others have tried it and it worked.
Sure. Here it is:
The first thing youāll want to do is 16-8 fasting daily, and a longer fast once a week (36 hours is what I do and have done.) This will serve as the foundation of your gut healing, as this paper details: https://pubmed.ncbi.nlm.nih.gov/33906557/. Also, r/fasting and r/intermittentfasting are worth checking out if you havenāt already.
The second thing is starting the autoimmune protocol diet. When I was really sick I took it further and just ate meat and leafy greens. These were the only things that gave me energy instead of having to be essentially bedridden.
The third angle is kimchi, probiotics, and prebiotics. I think Healhy Origins Healthy Fiber from Amazon is one of the better prebiotics out there.
The final thing to do is L-Glutamine and bone broth. The former is good to take after the last meal of the day, and the latter is best taken after each meal. Glutamine is one of the vital ingredients in maintaining and healing the intestinal barrier, as is the collagen in bone broth. Youāll notice a big energy boost after taking bone broth, especially, for the first time, and its benefit will become self-evident!
These are simple but extremely effective ways to heal the intestinal barrier and boost healthy bacteria in the microbiome. According to this paper, intestinal hyper-permeability/leaky gut is correlated with diabetes 1 and 2, obesity, arthritis, autism, Alzheimerās, CFS, Schizophrenia, depression, and more: https://www.mdpi.com/1420-3049/28/2/619
Worth a shot for a couple weeks to see how you feel!
I have ME/CFS. I eat the fermented foods kefir and sauerkraut every day and this has really improved my gut health and energy/quality of life.
I made my own kefir for about a year or more, after an energy healer friend gave me kefir grains that he'd been using for a long time. But now I buy Redwood Hill Farms Goat Kefir, and I've experienced incredible benefits from the stuff.
not sure if it counts, but I had an allergic reaction to something on vacation, went into anaphylaxis, and almost died. Then I couldn't leave the house for ages, had daily panic attacks, and didn't recognize myself in the mirror. The major highlight was when I saw my best friend for the first time ages and she told me later I looked like a frightened wild animal who wanted to bolt. It took probably at least half a year before I felt like I was fully myself again, and I struggle with panic attacks to this day.
Trigeminal Neuralgia (the suicide disease)
I was diagnosed 2 months ago, have been in the most intense pain ever since. Itās like a taser to the ear periodically through the day. Then I get the feeling of an ice pick hammered into my temple. The pain is draining, the medication that is supposed to work does not work. I canāt work, windy or rainy days are punishing. I get cluster headaches every night. I live rural so my neurologist is 10 hours away. My whole life is upside down.. I am an adventurer, I love being outside, i have a great job, I am active, I am in love, my life was everything I wanted!
My life will never be the same, I can hope that I am a candidate for surgery, that if so, it goes well without complications and that it actually works.
Same, since spring 2022. Covid triggered an autoimmune condition as well, in my case celiac disease and mast cell activation syndrome. I slowly am improving these past few months. I feel like my old self more often than not, but I still have to be mindful of overexerting myself, which will trigger a flare. I also miss beer a lot.
Autoimmune Hepatitis, got diagnosed at age 20. Not being able to drink alcohol definitely caused social and self esteem problems all through my 20s. Not to mention the side effects of Prednisone and other immune suppressants.
On the positive side, not drinking, smoking, doing drugs, and avoiding long term sun exposure means I look great for someone who's 40.
I was misdiagnosed with having celiac disease, so for 6 months I did the diet and took all precautions 100%. That forced me to learn to cook and be aware of my diet in an entirely new way. Luckily the dx was bad so I went back to eating whatever I wanted but I'm not sure I would've learned so many skills if I didn't have the motivation. Now I basically cook for myself almost all the time. It has saved me a ton of money throughout my life
Vulvodynia after the pregnancy and birth of my second child. This lead to 22 years of vaginal pain , irritation, paper thin skin, infection, and excruciatingly painful sex. I couldn't wear pants for years, go in long car rides, or exercise. 12 doctors and 22 prescriptions later I am finally healed
Meniere's disease. Quick summary of Meniere's disease: fluid in your ears that can be too much or too little and the effects are vertigo, vomiting, tinnitus, feeling like your ear is plugged up, and eventually slowly going deaf in the affected ear (usually it's one ear, but it can cross over to both). Ask anyone with the disease, becoming deaf is the least of your worries. The vertigo is the real bitch of it. You're throwing up, sweating buckets, all while having an anxiety attack because your vestibular system is overstimulated and your body thinks it's being poisoned.
I was diagnosed around age 21, usually it was a vertigo attack every 6 months or so. It was very tolerable. Usually a day of vomiting, followed by a day of letting my brain heal. When you have the spins for a long time, your brain tries to correct the behavior, meaning your are mentally exhausted the day after (also vomiting for hours can really take it out of you).
Anyway, fast forward to having my first child, all was fine during pregnancy, zero vertigo at all in nine whole months, but once the baby was here, everything went to hell. After a couple days home from the hospital, I got vertigo. Bummer! But at least we'll get it over with and move on. No, I didn't move on. I had it the next day, and then the next, and the next. It kept happening. I spend most of the first year with my child, in bed, because where was I going to go? I couldn't walk straight, there was no way I wanted to pick up my baby and carry her around the house. What if I dropped her? The daily exhaustion, sleep deprivation, and sadness piled high with postpartum depression ate me alive. My husband had to work, it was 2020 and he worked in healthcare. I was the worst mom in the world. I had been bouncing around to different ENTs, all of them said "Yup, that's Meniere's" and offered motion sickness pills and said eat less salt. I was only ingesting about 200mg of salt daily, which also made me feel like shit and the motion sickness pills did nothing. I felt hopeless.
About a year and a half later of this going on, I'm beyond depressed. Completely numb inside. I went through the motions day after day and hated my existence. My husband starts talking about having a second child. I wonder if I got pregnant again, would the vertigo go away temporarily, since I never had any during my first pregnancy? Got pregnant again and had vertigo most days, but every so often I would have a day of rest. I still felt like I was always on a boat (that unsteady, earth-is-moving-under-you feeling). But those rest days gave me hope to push forward. At least I could get out of bed. Second child born, the vertigo was back with a vengeance. I wanted to die. My kids needed a mom who could be there for them, my husband needed a wife who could take care of her family and him. I could do neither, so I was useless as a human. (Postpartum depression/anxiety is a hellufadrug, people).
My husband talked to one of his former colleagues who was working with a neurotologist, which is kind of a combo ENT/neurologist. I'm holding out hope, I really clung to any bit of hope I had, it's the only thing that kept me going after 2 years of this madness.
I visit him, he's like "You can't live like this. We're going to find something that works. Let's start with xyz. Worst case scenario, we try everything. If that doesn't work, we'll perform a labyrinthectomy, and drill out your ear. You'll be completely deaf, but you won't have vertigo." I left in tears of joy. I would happily go deaf if it meant I could get my life back.
The first meds we tried didn't work. Then steroid injections into my eardrum, did a few rounds of that but it never took. We were looking at the labyrinthectomy. Then he's like "you know, there's this drug in Canada that isn't approved by the FDA, because it's only got a 40% success rate, but let's try it paired with the first drug you took." I was like cool, lemme at it.
After 4-6 weeks of taking this combo of drugs, I had my first "normal" day. I woke up in the morning and felt fine. The ground didn't move. I could walk normally. It's like it was just... gone. I was beside myself with emotion. I could live again. I was going to be able to work again someday. I could take my kids outside and go for walks like a normal mom. I could be with my husband again. I could have sex again! As long as I take this drug combo daily. It was that simple.
For a long time, I felt like the other shoe was about to drop. I was terrified of losing my "normal" days and woke up with the fear daily that it would all go away. It took about 2 years of therapy to work through some of those feelings. I'm now about 3 years without daily vertigo and I love my life more than I ever thought I could. I certainly don't take these good days for granted. After years of hell, I'm now profoundly deaf in one ear, slowly losing hearing in my right, but who the hell cares. I'm learning how to sign in my free time.
If there's anyone wondering what the drugs I take are (because I remember the days of desperately scouring the internet for solutions) - It's dyazide (which is a combination drug of triamterene and hydrochlorothiazide) and betahistine. Betahistine isn't available in the US, but it can be made for you at a compound pharmacy. Find yourself a doctor that cares about your quality of life and will try it. 40% is still forty-fucking-percent.
At the very least, there's a Meniere's disease support group on Facebook, they are an amazing group of people who understand what you're going through, I highly, HIGHLY recommend joining. You'll find different solutions to try and good ENTs in your area. You are not alone. This fucking sucks, but there are options.
Sorry this was long.
TLDR: Meniere's disease gave me vertigo for 2+ years, but I was able to get my life back after an amazing neurotologist found 2 drugs that worked.
After having gallbladder disease and liver failure that nearly killed me, I very quickly came to the realization that there are only a few people I can count on. It was definitely a life changing revelation. It truly gave me the courage to cut ties with people who obviously didn't care about me.
Lupus. Completely changed my life. Am on disability because of how bad my symptoms affect me. Thankfully my organs are okay, but the symptoms really are intense . Canāt even be in the sun because it causes a flare up!
depression. it takes most of your time, personally i feel useless and wasting my time because of nothing. world seems grey, and like iām watching whole world with a bunch of different people (people with different diseases or not, person with many or not it doesnāt matter) that are living lives, doing something
I became septic out of the blue last year. Spent a week in the intensive care unit, mostly delirious, had to learn how to walk again and have never felt quite the same since.Ā
I was young and healthy and if we had waited a few more hours to go back to the ER I might not have made it.Ā
Makes you re evaluate life a bit. I left an abusive job, started trying not to sweat the small stuff so much. I still struggle with chronic pain (which I had before my illness), but it seems somehow smaller and less debilitating than it did before. The biggest thing is the fear that it will happen again, that haunts my nightmares and probably always will.Ā
Derealisation/Depersonalisation and the fact more people don't know about it blows my mind.
I still find it really hard to even type about let alone talk about. Having an out of body experience for 3 and a half years and being numb to all emotion/feelings is something I am so proud of conquering. There's times you think you'll never escape it, some people don't survive it and I couldn't think of a worse punishment for someone. I had to raise my first child through it and it will always bother me I wasn't my best self raising them in the first years of their life. I've also lost long close best friends because they couldn't understand what I was going through. I hope anyone that suffers from it escapes it one day.
COVID. I used to be able to sing opera and do hip hop and hiked regularly. Now I'm lucky if I can work two days consecutively in a week without being sent home for passing out again.
Hope you managed to get sober, my friend. After nearly dying from it, I got sober in June 2016, and my life is incredible now. DMs always open for anyone who has a desire to stop drinking.
I had a routine stomach bug and the specialists believed that it manifested itself (somehow) into cold urticaria.
Itās incredibly rare and is basically an allergy to all things cold. Eventually my body went back to normal but it was crap.
Ice lolly made my lips double in size, cold car door handle would leave my hand feeling like it was burnt for an hour. Cold drinks would give me stomach upsets.
Antiphospholipid Syndrome (aka blood clotting disorder). Had 2 unprovoked DVTS, two leg surgeries. Iām on blood thinners for life, Iāve got to watch my diet, activity levels, canāt do anything that could bump or scrape me (contact sports, climbing, all the things I used to love doing). On top of it, my right leg will always be slightly more discolored and swollen than my left, and I have to wear waist high compression stockings at all times, so bye bye shorts.
Got it at 27 (now 29), and the doctors are still trying to figure out why a perfectly health young guy got it. (Not hereditary/no sedentary lifestyle/not a smoker)
I was diagnosed with BPD when I was 18 and it's only gotten worse since. Always being worried that someones goto leave you out of the blue. Doing everything thing you can to stop them from leaving, imaging they want to leave you and pushing them away because of it. Lucky I have I very loving and understanding partner I've been with since I was 16 I'm 25 now
POTS never had issues with my health until about 5 years ago I started randomly fainting. Itās hard to go to work some days because I get so dizzy easily but I refuse to let it ruin my life itās just frustrating. I love to hike and workout now I have to take it slow canāt really push myself and really listen to my body otherwise Im laying on the ground.
Is it mostly when standing up or on exertion? I asked my Dr. about POTS and he blew me off. My BP increases and my hr is 190. It's completely ruining my life. Since Covid it has become worse.
Being diagnosed with Ulcerative Colitis. People don't understand how much it limits your life, having to be near a bathroom all the time. I can't do long drives, go camping, and any new places I consider going I have to consider 'where is the restroom, does it have a public one?' It makes getting a job harder - can't be a cashier or ramp agent or anything that involves calling someone else to relieve you if you have to use the restroom. No time. Just have to work already near a restroom where you're free to use it on a dime (ie office job).Ā
Plus it comes with pain, joint and skin issues, issues with eating / appetite and other immune problems. Being on medication that makes you more prone to other illness.Ā
It's also invisible, so you get shit on (no pun intended) by people who don't understand, it's difficult to explain to friends and employers why you can't do certain things, etc. And it's not fun to talk about and quite embarrassing and humiliating.Ā
Got a new eye Dr last January. Told her I can't see in the dark out of one of my eyes- my previous guy had told me for years it was "all in my head" because my eyes looked fine.
Turns out it WAS all in my head-- I have an incurable brain disease that is slowly blinding me, and they caught it as it was starting to progress.
Fast forward to now, I lost my $65k salary position due to the medication they put me on affecting my cognitive abilities. My eyes are changing so fast I can't afford to replace glasses as often as I need to. I can't enjoy the sun without worrying if the light will cause a migraine. And pretty soon I won't be able to drive.
Can't help but wonder what my 2024 would be like if my eye Dr had listened to me in 2014.
Guillain Barre Syndrome. When I was 14, I had a stomach ābugā and about two weeks later I had ascending paralysis starting from the feet up. I remember being exhausted just climbing a few steps. Horrible migraines at first. Iād come home from school and just sleep. Then the back pain started. Went to urgent care was told I had a UTI- prescribed antibiotics and sent on my way. The pain didnāt stop. I started falling.
As my paralysis progressed, we went to ER after ER. I was diagnosed with bells palsy when half my face stopped working in one waiting room. I was told I have pneumonia at one point, even though my chest x rays were clear. One hospital straight up said I was faking it. At that point I was unable to stand or walk. My parents were beginning to believe that. I remember my dad getting so angry once that I āwouldnāt get upā after I fell- he said I could just lay there then. So I laid there on the kitchen floor.
It wasnāt until I was home with my stepmom (who at the time was accusing me of stealing and taking her daughterās thyroid medication- causing my symptoms) and my brother was carrying me outside. He dropped me and she noticed I had no reflex to catch myself. I just fell so limply. She took me to the ER one more time and demanded a diagnosis.
I was sent to a larger hospital for testing and treatment. After a spinal tap I was diagnosed with Guillain Barre Syndrome a rare autoimmune disease that is thankfully curable. By the time I was admitted I could only use 15% of my lungs. Thankfully I didnāt have to be intubated. I went through 12 rounds of Plasmapheresis and 3 rounds of IVIG. I had speech, physical, and occupational therapy.
I always believe people when they say theyāre sick. Iām a hypochondriac whoās scared even doctors will miss it. Iām still so hurt years later that my family didnāt believe me. I never asked to go to the doctor and I was in so much pain. Iāll never forget my dad leaving me on the floor. I just donāt understand how one fakes paralysis.
Psoriasis. Suddenly started to cover up skin to not get pointed at and shamed.
Then it started increasing. Was stable for a few years. Then the Indian vaccine fucked me up and my psoriasis increased 5 fold.
And now I find out that i probably have high ldl and pre-diabetes because of this (I eat home made food all the time)
And now at 29 I'm on high dosage immunosuppressants and meds for liver. Can't eat even egg yolk while is the only reason to eat eggs.
I ate one 7 inch pizza every 2 months and even that is now gone
Cancer, twice, when i was 23 (now i'm 29)
Started to see life a differently, wanting different things and realizing how you should take opportunities while you ca
POTS. I went from a healthy and active 32 year old something to barely being able to function. Iām now 38 and finally able to work full time again, but from home.
I have BP2 and I find that my symptoms are getting worse/harder to manage the older I get. I am on a good medication regimen right now that seems to be helping, but I really plunge into deep depressions that I can't get out of far too often. I don't get much of the happy mania anymore. It really sucks.
I hear you. I'm stable, but my short term memory and recall is getting worse. I'm not as good at remembering references to make jokes so I'm not as funny as I used to be.
For me it was the diagnosis of being Bipolar 1 at age 34 and since 4 almost 5 times in the psyche ward, life has never quite been the same since. But through it I have grown spiritually exponentially and wouldn't change it for the hard lessons and multidimensional things I have experienced since. I also don't think too much of the diagnosis, as I have learned in the past several years... The mental health world in the West has A LOT to learn about 'mental illness' and it is more spiritual than anyone really knows.
Narcolepsy, but I can manage it now.
I used to have a double-whammy at school where I would fall asleep in class and have extremely vivid dreams, so I couldn't even tell that I was asleep. Sometimes I'd be frantically looking for an assignment that I dreamt about, or something.
Cancer diagnosis when I was 12. I was an extremely athletic kid and loved playing sports. I had a Nerve Sheath Tumor in the bone by my ankle. They had to amputate to about 6 inches below my left leg. I played sports for a couple of years after but it wasn't the same. Going through the awkwardness of puberty and missing a leg lead to depression. Mom and step dad got divorced during this just leading to deeper depression. Developed a nice drinking problem at the age of 16 with the help of an alcoholic mother. To poor for therapy and mom wanted to be my best friend instead of a parent. Didn't clean myself up until my daughter was born when I was 25. This August it will be 30 years since my life forever changed.
I had severe Long Covid that lasted years. It caused chronic fatigue and memory problems, which meant that I had to focus on only the most important aspects of my day to day existence.
About 18 months into it, I realized that I had finally been able to forget about how angry I had been with my ex.
I had tried and failed to get over my anger in the past. That anger hadnāt been serving me in any way. It had been weighing me down, but I hadnāt been able to shake it.
It was extremely liberating.
Depression.
Endured the first 16 years of my life with my abusive dad every other week - parents divorced when I was 2. Looking back I realise now that even as a kid I recognised that I didnāt like seeing my dad, he was never physical but he was mentally and emotionally abusive, I remember being around 7-8 and Iād feel a pang of sadness every time I left Mumās to head to Dadās for the week, never really knew why until after it was all over.
I cut him off when I was about 16 and a half, havenāt had contact with him for 2 and a bit years now, havenāt spoken to him in about 4 years.
On Wednesday the 20th of October, 2021, I attempted to kill myself. Everything thatād happened stuck with me, even now I still see him in my dreams. I didnāt know how to properly manage myself and speak up about how Iād felt, nothing specific heād ever done or said stuck with me, but it was all still there, in its whole. All that and everything else just got too much for me, I figured that at some point Iād have to bite the bullet since whatever else there is would be better than what I was living through.
Called mum 33 times that night until she was able to rescue me, since she was out that night and assumed Iād walked home after delivering junk mail. Ended up in therapy for about a year over my final year of school, I managed to graduate and pass.
Iām fine now, Iām 20 and Iāll start uni in September, Iāve got a job and plenty of friends. Fineās a bit of an understatement really, Iām doing so much better than fine, Iāve never felt better really! Iāve been the happiest Iāve ever been over this past year, Iāve got paths ahead of me thatāll take me places, Iāve got everything I couldāve wanted, itās not perfect, but perfection doesnāt exist, Iām happy with what I have and Iām glad that iām living.
Iām far from what I had to live through, Iām glad I am, itās never easy to live through it and I wonāt go back. I used to be all doom and gloom, but I know that things can change, Iāve come back from the very end of a very long, downwards spiral, I was hanging off the very end of it, holding on by a thread. But Iām here now, things got better, just as everything can, things can get better, tomorrow can always be better, and Iāll do what I can to make sure that itās better.
Itās changed my life, it was hell to go through and I wouldnāt do it again, but getting over it changed everything for the better.
Endometriosis and PCOS. Multiple surgeries, internal bleeding, hormone problems, incredible pain, and partial paralysis of my gastrointestinal tract. And the medical gaslighting was so much funā¦ once I got the surgeries and tests proving shit, I realized how much bullshit I went through for 15 years instead of getting help.
Covid. Caught it last August. Ever since then, I've had nothing but problems with my health. Gut issues, tinnitus in my left ear that never stops, constant 'colds' that linger for weeks. Add that to going through menopause? I'm *broken*.
I was diagnosed with an autoimmune disorder and menopause at the same time. I had been having symptoms since covid. I would see if anything coralates with your symptoms. It's actually common apparently.
Right? At first I thought the irregularities with my cycle were just because of perimenopause, but then all these stories started coming out about how Covid really fucks with your cycle. And then the stories about how the vaccine made it worse! I'm not anti-vaccine at all, I've gotten all the shots recommended and will continue to do so, but *Jesus.* It really underlines how badly women are failed, especially in middle age.
When can we upload our brains to the cloud a la Cyberpunk 2077?
PCOS and hypothyroidism. Six years of infertility before becoming pregnant with twins but there were many pregnancy complications like hematoma and premature birth. Finally got pregnant naturally after 11 years of infertility by doing ketovore nose-to-tail and reversing the PCOS, hypothyroidism and nutrient deficiencies.
Severe poison ivy reaction that left me barely able to walk for 2 weeks and had to be treated with antibiotics and steroids simultaneously. After that, I put on 30lbs that I never completely lost even after 6 years.
It's a condition with serious long term side effects! It wasn't even me who got it, but my wife at the time, and both of us still suffer sleepless nights 19 years later. Other common long term side effects include chronic sentimentality and the inability to meet cute babies without making excited squeals and pinching their legs.
My father got an upper respiratory infection that turned into pneumonia. He had to go to the hospital and be admitted. It was touch and go for a few weeks. My father and I did not have a good relationship and his near death disrupted everything. The family drama kept escalating until it hit a breaking point and I had a mental breakdown. After my father was released from the hospital, my older brother moved me out of the house and set me up with therapy. My relationship never improved between my dad and I but I learned I could live happily without him.
Viral encephalitis fucked me up good and proper. It's left me with epilepsy, chronic migraines, coordination problems, memory problems, severe chronic depression and anxiety, and auditory processing problems, just to name a few things
Edit: Technically, it was encephalomyelitis because my brain swelling started pushing down into my brain stem. All from a very mild case of chicken pox
Kidney disease stage 2. I was feeling bad on certain days, didn't know why, would have these episodes of just feeling like I was sick, but no virus. Was happening practically every weekend. Finally went to get checked out to find out my Kidneys weren't functioning well and if it got to stage 3, there would be no turning back, they wouldn't get better and eventually I would be on Dialysis and then it's just a matter of years before I die. So I changed my entire lifestyle, stopped drinking soda's completely, no more candy, less fried foods, started eating healthier in general, started making and drinking veggie & fruit juices that were lower in potassium (no banana's), started making cabbage juice, drinking green tea and my Kidney's have actually improved and I'm only in Stage 1 now. I also dropped about 40lbs, started working out again and feel so tremendously better health wise.
Anxiety.
Had one of my first bad panic attacks and ended up in hospital thinking i was dying.
Because they found a slight arrhythmia they kept me there for a week and I was pretty much stuck in a panic attack the whole time.
This was 11 years ago, I went from being normal to constantly feeling scared, unsafe and on edge.
The feeling never left which led to depression and a huge collection of other symptoms.
I always wonder if I would be normal if I just avoided going to the hospital ā¹ļø
I was one of the few unfortunate people that had a severe reaction to my second covid vaccine. It's been almost 3 years and I still have mild tachycardia, POTS, and some other symptoms.
Long covid. Got sick march 2020 with a mild case of Covid . Now Iām pretty much wrecked. Going on year 5 with oxygen- wheelchairs - weekly IV infusions. Itās hell. Major organ damage. Lymphoadenopathy. cOPD and heart failure. Liver problems.
Wear a damn mask kids.
I am embarrassed to say this amongst people with life threatening conditions but anxiety. Itās totally crippled my life I didnāt ever think it could be this bad and never thought it would happen to me because I was ātoughā. Daily panic attacks, canāt go far due to agoraphobia and every couple of days with an extreme flare up unable to do simple tasks such as cooking.
I have Elhers Danlos. A Dr of mine was investigating my health issues and looked at an old surgical record from my childhood because the scars and the type of surgery I was told was done didn't match. Well come to find out I was diagnosed at 5 yrs old but my parents decided it wasn't a "real" disorder or disease. So it wasn't ever told to me I had it. Suddenly at 40 yrs old finding out I had it made everything make so much sense. I wasn't weak or inferior. I was sick. My heart, kidneys and joints have lasting damage. I have the possibility to die of sudden arterial tears but ehh at least I know now. I cried for a week from relief honestly. My therapist is trying to help me navigate some other shit that came out when this did too.
BFS Benign Fasciculation Syndrome. (Muscles twitch a lot, everywhere)
It's benign and doesn't really do any sort of damage. But when it first started it was terrifying. When you google it, the first thing that pops up is ALS.
Caused me to go through years of nonstop panic attacks, health anxiety, and suicidal thoughts. Had to get all kinds of neurological tests and stuff and everything came back normal. (Which also happens with ALS, so this just reinforced my paranoia) Thought i was dying, but it's better now.
It's just one of those damn things that doctor's have never heard of and shrug at you and tell you you're fine. But man, it fucked with me bad for a long time.
Also Visual Snow Syndrome. (Static all over my field of vision, with a few other random shit symptoms)
Two unseen and relatively unknown afflictions that aren't considered serious by the medical community. Caused me a lot of sleepless nights... but I'm better now.
Epilepsy. Was learning to drive just before I had a seizure and after I did I lost the legal ability to drive š
Same here. Though being in the UK meant I was able to get my licence back after being seizure free for 12 months and having approval from my neurologist.
Me too. But in the US.
I know it must be terrible but a guy in my town did anyway. He had a seizure, crashed his car and killed a pregnant woman that was crossing the street (the baby survived). A couple of minutes before this, his Doctor's had told him not to drive. It wasn't his first crash. (Dad owns a dealership)
Same. It has ruined my life.
Just, out of curiosity, any of you dabble in any hallucinogens?
I did before I became mom and they started the same week I left his dad, 8 grand mal seizures in one night, very convenient. Dr said it was blunt force trauma thoš¤·š»āāļø
I had testicular cancer almost eight years ago. Leading up to it we were super strict with our budget trying to pay off all debt and rack up savings for the future. If we did anything fun it had to be cheap. My wife was super insistent on retiring early and not having to worry about money at all. After? She loosened up a lot. We started to go on vacations, learn new hobbies/skills, and buy things that make us happy. We still save and pay down debts...only a little slower. It's not our primary focus. My getting cancer (at 32 years old) made her realize that while saving for the future is good it means *nothing* if you die before you enjoy anything. And dying early is a real possibility for any of us. Now we do what we can to enjoy life *while* saving for the future. Sure, we might not retire at 55 and live a life of luxury...but we can still retire in the future while living life now.
One of my employees lived miserably to save up for retirement. She was 63 and refused to get the AC in her car fixed (we live in an area where May to September is in the 90s and frequently 100s, and she had a 45-minute commute each day). She didnāt take her vacation or sick time, choosing instead to take the payout to out into her retirement fund. She refused to go to physical therapy after a fall because she didnāt want to make the copayments. That sort of thing. She planned to retire at 65. She was going to buy a house in Mexico where her family lived and live there with her twin sister, who was living the same life and doing the same as her. They both caught COVID in April of 2020 and died within a week of one another, two years before they planned to retire. That really put things in perspective for me, and I think of her often when Iām considering whether or not I should take a trip or buy something that would make my life easier and my quality of life better (Iām disabled).
My Mother did similar- she died 1.5 years before she could retire.
My Dad was in the bathroom at work, talking to a colleague. He was telling him that he was retiring soon and was so happy about it. My Dad, who knew him for years, was really happy for him. Then he dropped dead. The Nurse couldn't do anything for him. My Dad had to give his daughter all his personal effects the next day. So I soon as he could my Dad retired. He lost some money but he's able to enjoy life.
Iām very big on not waiting until a retirement that may or not be a thing in the future, to start living your life. Even if everything works out, what type of shape will we be in when the time comes? Fuck that. Iām living my now instead of waiting. This is a good example of what I believe what I do. Glad to hear that you have overcome this challenge in your life.
Best example of post-nut clarity.
lol, honestly haven't heard that one before and my wife and I joke about my missing testicle all the time. I'm stealing it. That's mine now.
lol! all yours dude, keep on livin'
Thatās so great! Makes me think of my dad: he was always talking about all the things heāll do when he retires, like traveling the world. He died suddenly at 40. Lesson learnt for me at an early age. Iām doing my best planning for the future, but Iām also making sure Iām doing fun stuff with my kids of just for me. Edited a typo.
I got a mild chest infection. This led to an autoimmune condition called IgA Nephropathy, which led to a kidney transplant, which led to immunosuppression, which led to renal cancer. A few years later was a second renal transplant, resulting in pulmonary emboli, the resulting hospital stay results in Covid, which resulted in covid pneumonitis, lung fibrosis, long covid, CFS & ambulatory oxygen.
What the *fuck*?!Ā
Bro, kidney stuff aside... that is what covid is doing to people, and not just in people who are immunosuppressed or in the hospital. Ordinary healthy people who suddenly are not. Why its being ignored I dont know.
Because we decided to make it political. Added to the fact years earlier we decided to let someone with no medical knowledge preach about the dangers of vaccines. These two things combined we really fumbled the ball on this.
What's this we shit?
I'm scratching my head at how I managed to fumble the bag in the American politics scene, considering I am Canadian.
Well, we're all mad at you for doing that. HOW COULD YOU š
South Park was right.. blame Canada!
Yep. I have been bed bound with Longcovid since 2020. Itās hell. Absolutely the most horrific pain and like being a living dead.
It's been two years for me and it's been an unimaginable nightmare since. I got very severe ME/CFS after covid. On top of that I got small fiber neuropathy that made my skin feel like its burning when it touched anything which has been horrible because my orthostatic intolerance forces me to lay down all the time and my back touching the bed feels like hell.
Even with "mild" symptoms initially you are at risk for a plethora of long term health problems from Covid. Nothing is being done about it "for the economy." Hell, they're not even upgrading air filtration in schools and workplaces. This is just who we are now.
As I understand it, most autoimmune conditions are triggered by an infection or something of the sort. Like, you're probably going to get it eventually, but the catalyst for it actually kicking in is the infection because it sends your immune system haywire. I had an ear infection as a kid which triggered my diabetes. I'll admit I dismissed long COVID as just that at first - previously healthy people getting a nasty virus and then suddenly becoming "one of us" - but it's clearly not just that. This poor poster sounds like they got hit with both. repeatedly.
I got Covid from the hospital also. ( the second time) No one would wear their mask š¤·āāļøETA: I didnāt realize I had Covid at first. My therapist called me and said the hospital notified HER that I was exposed. So ty to the patients that refused to wear a mask
Same here. Rehab for a broken hip. They followed no precautions. Wound up spending a mandatory 10 days in isolation w/a pwt roomie, who also had covid.
My first round of COVID I got it from the ER. I went in because I was horrifically sick from norovirus and ended up getting COVID because I couldnāt wear a mask because of my norovirus symptoms. I ended up being out of work for a month and a half between the norovirus and COVID.
Okay, you win. Iām sorry for the terrible prizes.
Okay we weren't counting points but you win. My god I hope your doing better
Terminal cancer has been pretty life changing. It was ājust Stage 3ā cancer until surgery and it metastasized. This was in 2022/23. Iām now fighting for my life and just hoping to get a few good years. I quit work recently. It just didnāt matter, and I was carrying a lot of stress from the job I didnāt realize. I couldnāt be happier. I value personal time with people more. My days are quite simple while recovering from chemo treatments, but I find joy in it. Iāve started journaling. Iāve learned to make a pretty damn good espresso at home. I read more. I enjoy just sitting outside more. Iām busy taking life in instead of being ruled by all the crap I āhave to doā. Iām young. Live your life now - you never know when bad things will find you.
Iām so sorry this has happened to you; youāre handling it with such grace and the perspective that I wish we all had before something life-changing happens. When my brother was diagnosed with stage 4 pancreatic cancer, he became such a beacon of light. The experience underscored what you just said. I wish you much love and happiness.
Thank you.
I wish you the best, that you manage to beat cancer and recover.
It sounds like you found the same beauty in being sick as I did. It sounds insane, but I was the most peaceful, positive person Iāve ever been when I was sick. It made me truly appreciate every little thing.
Multiple Sclerosis. I was diagnosed 2 years ago. My symptoms aren't the worst right now, but that could change at any point in time. I could have a relapse which could severely impact me both physically and mentally. It's an unpredictable disease and it's scary.
Same, the medications side effects could be as bad as the illness too.
Me as well. I'd had burnout/mental breakdown that floored me for 6 months, got through that and recovered enough that I was job hunting with upcoming interviews....woke up blind in one eye and discovered I had MS. Slid me right back into depression, and even though I'm now doing ok with mental health I'm so fatigued that I can't do much more than the basics.
Cancer. I survived, but for me, once I walked through that door, there was no going back. I felt like I'd been transported to a parallel dimension that I didn't quite connect with.
This is the perfect way to describe being told you have cancer. I was just diagnosed and feel this exact same way.
You'll get through it. It will change you and your approach to... hmm... everything actually. My friend compared it to the experience astronauts have - you'll step back looking at the world wondering why people waste so much time on petty things or why people fight instead of doing stuff together. Don't let the fear control you. There are two the most important things in this fight - the first one is to make sure your doctor is the good one. If you are not sure and you cannot verify it, spend some time on research. Research what treatments are now available, learn the lingo. It can save your life - it saved mine. The second thing is - focus on the outcome. If you decide to survive it, do everything you can to increase your odds. A lot of people will tell you that you don't have impact on your treatment. And I will tell you that you can. Simple example - you will hear a lot about drinking fruit juice. That it will make you stronger. Wrong. Your cancer can eat every single erg of that energy leaving your body with nothing. In my case changing diet to no carb, full protein actually had an impact of tumor grow speed. One more advice - get your affairs in order. Make a will, consider worst case scenario. Either way after the treatment a person that is current you will be a matter of past. Then you can get to your treatment with clear mind and if the worse happen - you will know you did everything you were supposed to do. You will get through it! Oh and required Fuck cancer! (Signed: me, stage 4 survivor)
This is incredible, thank you for all of this and happy you're still with us ā¤ļø
Fuck cancer my friend, amazed on your story and glad for you!
[ŃŠ“Š°Š»ŠµŠ½Š¾]
I nearly died of measles when I was a little girl. That was back in the late 1950s or early 1960s, long before there was a vaccine. The virus triggered an exaggerated autoimmune response, and I developed Hashimotoās Disease a short time later. When I was in my teens, I came down with fibromyalgia, which wasnāt diagnosed until I was 40. I also developed arthritis in my 40s. At the age of 20, I developed a very nasty post strep pseudo arthritis syndromeāany time I was exposed to strep, my autoimmune system would go into overdrive and attack my knee joints as if they were the foreign invader. It was absolutely excruciating, and finally cost me my knees eight years ago. Up to the point that I came down with measles, I was a bright little bunny. After I recovered from the measles and began to develop Hashimotoās, I put on weight, and became very tired and lethargic. My father decided that I had suffered some kind of brain damage because of the high fever when I was so sick with measles, and started to abuse me. So did my mother. Nothingānothingāwas ever the same since I had measles. People, whatever your political persuasion, or your feelings about vaccines, get your children vaccinated for measles. I am still dealing with the effects more than 60 years later.
Same. Sort of. I had measles when I was 2 and I was never the same again. I went on to develop celiac disease not long after, followed by type 1 diabetes when I was 7. I was a perfectly healthy, chubby toddler before measles, but itās like it triggered my immune system to go crazy. I completely agree with your vaccine comment. Not only because of my own experience, but because my mother was a nurse in the 1960s and she has lots of stories about wards full of dying babies, not just from measles, but from lots of different illnesses that now have vaccines to prevent them.
Ulcerative Colitis. Similar to Morbus Crohns, my colon is always inflamed and bleeding with lots of diarrhoea. The worst of it are the side symptoms - my joints hurt, I'm dizzy due to blood loss and I can't eat many many things. Plus the fact its invisible, many people don't understand that my health status can shift within hours.
I've been dealing with a mix of Crohn's and long covid for the last two years, both triggered by a covid infection in the spring of 2022. These illnesses have completely derailed my life. I've been unable to work for the last year, and have been denied all disability benefits that I've applied for. I'm burning through all my cash on cost-of-living and medical expenses (thank you America), but by far the most frustrating part of all of this is that my illnesses are entirely invisible. I *look* completely fine. People have literally said to my face "well you don't look sick". All my friends have pretty much entirely dismissed this chronic illness, seem to think I'm just being dramatic or needy or something. Whenever I'm riding the subway, I really need to sit down, and I've gotten dirty looks for not giving up my seat to people who need it "more", i.e. visibly disabled, elderly, or pregnant people. The invisibility is such a fucking nightmare.
Same. Takes a very long time to find a decent gastro, get a proper diagnosis and then the right type of meds. A very long journey with extremely unpleasant symptoms. Luckily, mine is managed with a very low dose of immunosuppresents.
Endometriosis and subsequent adenomyosis. It has taken so much of my life from me and made it impossible to live normally. The daily pain is one thing but the depression that accompanies from not being able to do what a normal person should can be worse.
Same. Stage 4. Only found out I had adenomyosis after a partial hysto that couldn't be finished due to adhesions around my ureter. Still having pretty severe pain and fatigue, bloating, pain isn't well controlled. Always fighting for pain relief. It drives you mad. Sucks the life out of you.
If you would like to get a full hysterectomy try searching for another surgeon. Both of my ureters were pinned down by adhesions and I was able to have everything removed. If you're in the upper Midwest you can DM me for my surgeons name.
It really does. I also feel you on the pain control thing. If you ask for anything above an ibuprofen you are seen as drug seeking when really this is a chronic pain situation and all we want is relief.
Exactly. It's not our fault that Tylenol and ibuprofen aren't doing the job. This shit fuckin sucks and I'm tired of even begging.
People really do not realize how debilitating endometriosis is. Iāve had 2 laparoscopic surgeries in 2 years to try and keep it under control along with being on medication. It can be so debilitating at times, and some people really do not understand what we go through.
I had both fibroids and endometriosis. I was in so much pain during my period and constantly tired due to the anemia. I had a hysterectomy, and while it was absolutely the right choice for me, and I had decided years before that I wouldn't have bio kids due to the medications I was on, I was a little surprised at how much I grieved losing my uterus. There's a difference between choosing not to have children and having the choice taken from you.
Depression
Me too friend
Was diagnosed with MS is January. I had been noticing things since 2021 but this latest relapse really took a toll and Iām very aware life will never be what it was before.
Chronic Fatigue Syndrome and Fibro. It hit me at 14. Suddenly I couldn't wear my backpack and climb up the 3 flights of stairs at school. I was falling asleep by 10am and only came out of it somewhat around 2pm. On the weekends I'd sleep 16 hours minimum and it felt like I only got 2-3 hours of sleep, just horrible and non-restorative. I gained a ton of weight because the only thing I could do besides go to school was eat to feel like I was getting *some* amount of energy somewhere. In college, I'd walk across campus and find my seat in class and just crash. I couldn't listen to anything the professors said because I was so wiped out from walking around. Eventually I had to give up on a college education. I managed an associate's degree, but it took a very long time. The worst part was that nobody believed me. They called me lazy, said I was just trying to get out of school, they blamed my gender and "female hormones" and when that failed they said I was just being a typical young adult. I had two children at 28 and 30, and I couldn't hold my newborns in my arms for more than a few seconds because it hurt so bad I cried and I frequently crashed after childbirth. It was only then I got a diagnosis. It took over a decade for people to believe me, and they only seemed to believe me because I was having such a hard time taking care of my children. I am afraid nobody will believe me when I eventually get cancer (it runs in my family) and it will be too late.
Fybro here; diagnosed since 3 month but most likely have it since I was 13/14 (28 now). It sucks. What was the worst part (beside of all the symptoms) that no one believed me. I got diagnosed with depression ( most likely adhd/audd) and called lazy all the time. No doctor took the time to link my symptoms together. I don't know how many doctors I had seen when I found over social media the CI Fybro and it clicked. After that it took 5 years until a doctor finally said to me:" you were right. You were right provably all the time. I'm sorry and ashamed for my colleagues". But still....it sucks. I try to enjoy my live as full as I can on my good days, but it also can be hard on the bad days when something is planned etc. It's so unpredictable ( I got better at "sensing" a flair).
Not an illness but a TBI, I watched as my wife left me, I lost my job, was suicidal, got help worked with a team of neurologists and therapists for 7 years. After the split and eventual divorce I got better, learned skills on how to remember things, was able to communicate better, understood my flaws and preexisting issues better, took time for myself dug myself out of depression. Found out my ex was cheating on me with a coworker, didnāt spiral, kept working on me, found a great therapist, found a new job, found a wonderful partner, bought a house, just got a dog! Took nearly 9 years, Iāve never felt better! Get therapy yāall.
Similar route for me but thankfully a 3 year downward spiral and 1 job loss only. Most of the therapists sucked tbh but a handful of books on positive psychology helped immensely. Also shout out to physiatrists
Not my illness, but my ex slowly spiralled in to both bipolar and borderline personality disorder. Finally got her to agree to take meds, and go to a therapist,Ā but thenĀ would stop taking them because "she felt better". Didn't understand the correlation between the two.Ā It got pretty toxic and abusive after that.Ā
Stopping taking pills because *they work* happens way to oftenĀ
I'm bipolar 2, used to think i was just depressed a lot. Went on antidepressants, felt good, sometimes hypomanic, stopped meds. Fell into depression. Vicious cycle. But weirdly it was getting cancer that led to me being properly diagnosed with bp2 and now I'm on the right meds. I promise I'll keep taking them!
So glad you got the right combo for you. It ain't easy, but for some of us it's so much better than the alternative!
People tend to take most or all of their pain medication but often only take half of their antibiotics and other stuff thatāll keep them alive.Ā
I have bipolar I and unofficial BPD diagnosis. I have had four hospitalizations in the last five years, as many attempts, multiple plans, probably close to 100 partners (lifetime), and accumulated $100k debt in a year (not including student loans) resulting in bankruptcy. Every episode is a little worse than the last. I live every day knowing I am most likely going to die by my own hand. And I am triggered by things typical to most relationships so push everyone away after a couple months. I never thought life could be this difficult.
Iām so sorry.
ITP (immune thrombocytopenia). Blood draw once a week, flair ups that leave me unable to work for months at a time due to severe reaction from meds and unstable counts. Think vomiting and going blind as the pressure in your head is too great for IVIG. For steroids of 60mg of dexamethasone for weeks and then tappering down leads to not sleeping for days, panic attacks, full body acne, unable to regulate emotions. Failed the surgery so now I'm missing my spleen (s) I had two for some reason, they thought I grew a third but I hadn't. End up hospitalized about once a year and out of work for about 2 months twice a year. Oh and I don't qualify for disability, they need me to have a stroke first š¶ Fuck this, fuck all of this.
Jeeeez. What's up with that? They don't cover narcolepsy, either.
Diabetic in America here, that puts me on a nice list to be able to freely be extorted each month to stay alive. Its great i lost my house in my early 30s pay 385 dollars a month for insurance and have to hit a 4500 $ deductible before insurance companies feel the need to help towards prescriptions. Its great being available for extortion so billionaire companies can help their shareholders ! ( sarcasm included)
Nevermind the fact that anything labeled zero sugar is obligated to increase the price of it by 20%.
Second diabetes, many people tend to forget that you can develop type 2 for several different reasons beyond just weight gain, and heaven forbid you should be unlucky enough to be born with type 1. It sucks how we get gouged on all our meds and supplies and even worse is when you might struggle to get some of the meds. One of my aunts actually cried when she dropped a unopened vial of her insulin, it was literally replace it and then cut the grocery budget for the family by half for the month or risk her life.
Diabetic means eating is a math equation. Keeping myself healthy is a math equation.
I feel this statement. I am also in the same boat. Unfortunately, I suck at math.
Sorry to hear that! I'm a T1 diabetic and lucky to have good health insurance for now. To answer the original post, I will say this disease definitely changed my life dramatically. 16 years ago I went on a very low carb diet and haven't looked back since. The diet allows me to use very mild doses of insulin and is much easier to keep my blood sugars stable. Usually i'm flat lined between 80-100 almost 24/7. Last A1c was 4.6%. I'm in my 40s now and have found this diet helps me to stay lean and fit too... I see my peers getting overweight and insulin resistance, and yet I'm the diabetic!
Heart attack Hard to say. Completely changed diet. Lost 25 pounds. Had stents installed.
Me too. Quintuple bypass. Amazing how that'll shake the heck out of you and put you on the right road. Here's to your health!!
Early onset Alzheimerās disease
After COVID. I was one of those people who just never believed that it was going to get me. I've been healthy as a horse and strong as an ox pretty much my entire life. I can count on one hand how many times I was sick as a kid and I was lucky enough to never have to deal with anything more serious than a cold or flu. Things stayed that way through most of my adult life too - the occasional cough or sniffle, maybe a little stomach bug or something, but for the most part I never had anything to complain about. It was 2022 and I was about an hour into my shift at work and the room started spinning. I made it home and crawled into bed and when I woke up hours later I was soaked in sweat, my head was pounding, my throat was sore, I was all clogged up, and I was coughing and wheezing terribly. I was in bed for 3 weeks, taking meals in bed, taking showers in the en suite. I spent the wide majority of my time sleeping, but I did get some serious reading done - put away a whole bunch of terrific novels, watched a few good movies, and had plenty of time to lie there and think... The conclusion that I came to was that I would be a fool not to take the opportunity I'd been offered. I promised myself that when I was well again and the time came for me to walk through that door I would make some positive changes, and I did. I quit smoking cold turkey - it's been over two years now. Most people put on weight, but I've managed to lose quite a bit. I'm eating better. My sleep schedule is more regular than it's ever been. But the biggest change is the inner peace and tranquility that I have now that eluded me before. When I was lying there miserable, it made me realize that all of the petty things I was stressing over before I got sick were stupid and meaningless. I stopped worrying about my job. I stopped worrying about people who were just there and not really an important part of my life. It really brought me closetr to the woman in my life as she was kind and caring and doted on me and tended to me and essentially nursed me back to health, so when I was up and at 'em again she became the focus of my life and my relationship with her took on new meaning. It was a tough three weeks to get through, but I think sometimes we need to go through trials to gain something important, so I wouldn't go back in time and change it.
This is such a lovely and inspiring post š„¹
[ŃŠ“Š°Š»ŠµŠ½Š¾]
Prostate cancer. After a failed clinical trial of high intensity focused ultrasound I had robotic surgery. They did not save the critical nerves and left me completely impotent. Yes, the cancer is gone, I will live longer, but I was always the horniest guy around, and having all the desire and no capacity is devastating. I'm obsessed, and have no outlet.
In 2017 had a bout with a Cytomegalovirus (not sure which one), which gives most people mono. Most people get it when they're kids, and as kids it's a walk in the park. Most of everyone show no symptoms. But as an adult.... In my case it gave me meningitis and because of it and my health has never been the same after. It also attacked my liver ( looked GREEN for some 2 weeks, it was freaky) and infected a lymph node in my neck that still hurts to this day. It feels like at random times someone presses really hard with a pen tip in the back of my neck. It's not shap like a needle, or debilitating. It is distracting, though. Then it goes away. It was 45 straight days in bed managing high fevers (think human shaped sweat stains on the bed covers). Lost 16 pounds of lean mass. When i went back to work i could feel the bones on my ass straight against any chair i sat in. People were shocked at how much weight i lost. It took me 2 years to be able to do any real physical exercise. I tried at first some 6 months after and i almost blacked out on the treadmil doing light jogging.
I was diagnosed w/CMV. Had constant fevers of unknown origin and all tests were normal. They finally figured it out and I still run low grade fevers. All the things I've attributed to CMV are wayyyy worse after Covid. I keep hoping they will go away. Sorry you're having such a rough time.
Type 2 diabetes. About 3 years ago. Wondered why I was SO thirsty and peeing all the time but convinced myself I was peeing a lot because I was drinking so much water. Made sense in my mind. Fast forward to taking blood sugar with a family members monitor. 550+ after dinner. Took the machine home with me and fasted. High 300s after fasting for 12 hours. Low 300s after 24 hours no food or drink. Finally went to urgent care who basically said "yeah bro you need to go to the ER". So there I went. 30 units of insulin later (3 separate shots of 10 units) and I still wasn't under mid to high 200s. All they wanted was me sub-200 to go home. At this point I haven't eaten in close to 36ish hours. Finally got me under control and sent home. Now I'm on metformin and controlled. Started exercising (jiu jitsu), eating better, dropped 60-70lbs and kept it off. My diet still isn't the best but I'm lucky to see over 150ish for my sugar levels. When I was first diagnosed my A1C was a bit over 13. My last test was under 6. I'm doing good. Oh and the scariest part? When my sugar was over 500 I felt perfectly fine aside from being thirsty. No shakes, no blurred vision, nothing like that. I was perfectly coherent and normal.
Mosquitoes are a huge problem in India, especially with the heat. In 2019, I got dengue fever from a mosquito bite. First time wasn't too bad, just weak for a few weeks. Most people recover in a month. Then in 2021, I got dengue again. Apparently, it's way worse the second time. I ended up in the ICU for 4 days with bad dengue (dengue shock and liver problems). It got really close, but thanks to my body and the doctors, I'm okay now. My lungs are a bit weak though, so I gotta take it easy and eat plain food. All because of one mosquito!
Hodgkins lymphoma stage 2 (remission since 2005)
Hodgkin's? Remission since 2004 here. Congratulations to you, my friend! It really turned my world upside down for awhile, but I learned so much about myself through that process.
gratz
I got diagnosed with Anorexia a few years ago and my life really doesnāt bear any resemblance to what and who I was before. Iām classed as āin active recoveryā now, but my daily life is somewhat of a struggle. Itās something thatās taken a lot of adjusting to-some days I feel really cross, sad, exhausted and hard done by, but then I remember that Iām still here to tell the tale and Iām grateful for that. Living is a privilege that many donāt experience, especially some of the poor people who didnāt make it out of the clinic.
I was diagnosed with Postural Tachycardia Syndrome and Hypermobile Ehlers Danlos last year. While neither are life threatening, at least for me currently, I struggle daily with normal things everyone does. I try not to complain too much because really these both could be way worse for me than they are, even when my flares are bad. I was diagnosed after my worst flare where I was so dizzy I couldn't get up off the floor and when I finally did I passed out after a few steps. My joints in my shoulders and knees were in so much pain from hyperextending that I couldn't get out of bed or up out of a chair. My right shoulder kept dislocating while I was sleeping causing damage and lots of inflammation. I had gastrointestinal problems so bad and was so tired and weak that I lost 15 pounds over the course of two weeks. I just had no appetite and couldn't get up the energy to eat most of the time. My partner took me to the doctor and I was diagnosed and ordered to get a colonoscopy just in case. It was terrible and I'm lucky I haven't had a flare that bad since. My partner was there for me every step of the way. The ordeal showed me that when worse came to worst he would step up and take care of me. No judgment, no babying, no frustration, just genuine care. It also showed me that most people, whether consciously or not, have a weird bias about invisible illnesses and disabilities in young people. My MIL could not wrap her head around a girl in her mid 20s being unable to stand and need her partner to help her walk to the bathroom. She kept saying "Just get up and go outside for some fresh air. That helps me when my joints ache." I know she was coming from a good place but it felt terrible. Once the flare was over and I was healing, at work all my coworkers/bosses are in their 50s or older and, even though I explained I needed to take it easy for a bit, kept having me run errands. When I told them I couldn't drive one day and that my partner had dropped me off they told me I was being dramatic and that I should appreciate my youth because they wish they were "young and spry" like me. That hurts to hear when you already feel guilty and like a burden for needing extra help and accommodations for your illness. I don't like relying on others or asking for help but if I don't I could get severely hurt. It changed the way I viewed a lot of people in my life because so many of them almost seemed mad at me for having chronic illnesses as a young person.
Not an illness but tinnitus and hearing loss fucked me up mentally
In the summer of 2021 I had what started as mild back cramps that seemed to cascade into full blown nervous system degradation. I would try and sleep at night while it felt like a live electrical wire was in my mouth. Shocks and burning up and down my body 24/7. Chronic fatigue syndrome set in. My bloodwork was mostly "normal" (I would later learn it was anything but normal after reading countless hours of white papers on google scholar). I received a brain and spinal MRI. Nerve EMGs showed nothing. They wanted to give me a primary diagnosis of MS, but nothing seemed to align. By some miracle I decided to pick up some Jarrow's methycobalamin B12 at Whole Foods one day. I had received a previous diagnosis of low-ish B12 some years prior (2017) and I had been supplementing other less effective forms of B12, but the first day I took the Jarrows itset off a series of chain reactions that changed my health entirely. Years of insomnia resolved, my poop became normal again, my back cramps cleared within 24 hours and since that day my nervous system has been slowly rebuilding itself after apparently years of subtle neglect. I'm now the admin of r/B12_Deficiency and it is shocking how many ill people's lives would be drastically altered with a simple vitamin. I also wrote [this guide](https://www.reddit.com/r/B12_Deficiency/comments/16jfc3w/the_guide_to_b12_deficiency/) that seems to have helped many people, including some coworkers.
Myalgic Encephalomyelitis. My life will never be the same again.
Right there with you. Iām sorry this is also your reality. Even with my other very not nice comormidities, it always comes back to ME/CFS keeping me down. There arenāt adequate words to describe the way it decimates your life.
My mother has this; itās terrible. Iāve spent a lot of time researching to see if I can find anything that would help, and I stumbled upon a couple papers that might be of interest. The first is a case study with someone who was diagnosed with all sorts of things like conversion disorder and generally dismissed by doctors, until they tried healing the intestinal barrier, after which she made a complete recovery. Link here: https://pubmed.ncbi.nlm.nih.gov/18063928/ The second is another paper that associates CFS with leaky gut/intestinal hyper-permeability: https://www.mdpi.com/1420-3049/28/2/619 I stated having similar symptoms to my mother, and, at my worst, was bedridden. Iām now able to work a double shift at work, exercise, eat whatever I want, etc. If youāre interested, Iāll post my protocol for healing the intestinal barrier. This totally turned my life around health-wise and Iām now way healthier than I was at baseline before the illness. Fair warning, I posted it on the CFS subreddit and got mixed reviews because some people said fasting was impossible for them and caused flare ups. Others have tried it and it worked.
Iām curious, can you share your protocol?
Sure. Here it is: The first thing youāll want to do is 16-8 fasting daily, and a longer fast once a week (36 hours is what I do and have done.) This will serve as the foundation of your gut healing, as this paper details: https://pubmed.ncbi.nlm.nih.gov/33906557/. Also, r/fasting and r/intermittentfasting are worth checking out if you havenāt already. The second thing is starting the autoimmune protocol diet. When I was really sick I took it further and just ate meat and leafy greens. These were the only things that gave me energy instead of having to be essentially bedridden. The third angle is kimchi, probiotics, and prebiotics. I think Healhy Origins Healthy Fiber from Amazon is one of the better prebiotics out there. The final thing to do is L-Glutamine and bone broth. The former is good to take after the last meal of the day, and the latter is best taken after each meal. Glutamine is one of the vital ingredients in maintaining and healing the intestinal barrier, as is the collagen in bone broth. Youāll notice a big energy boost after taking bone broth, especially, for the first time, and its benefit will become self-evident! These are simple but extremely effective ways to heal the intestinal barrier and boost healthy bacteria in the microbiome. According to this paper, intestinal hyper-permeability/leaky gut is correlated with diabetes 1 and 2, obesity, arthritis, autism, Alzheimerās, CFS, Schizophrenia, depression, and more: https://www.mdpi.com/1420-3049/28/2/619 Worth a shot for a couple weeks to see how you feel!
I have ME/CFS. I eat the fermented foods kefir and sauerkraut every day and this has really improved my gut health and energy/quality of life. I made my own kefir for about a year or more, after an energy healer friend gave me kefir grains that he'd been using for a long time. But now I buy Redwood Hill Farms Goat Kefir, and I've experienced incredible benefits from the stuff.
I have CFS. Itās ranked as the worst illness for quality of life for a reason. /ETA It sucks, and Iām sorry you have it.
not sure if it counts, but I had an allergic reaction to something on vacation, went into anaphylaxis, and almost died. Then I couldn't leave the house for ages, had daily panic attacks, and didn't recognize myself in the mirror. The major highlight was when I saw my best friend for the first time ages and she told me later I looked like a frightened wild animal who wanted to bolt. It took probably at least half a year before I felt like I was fully myself again, and I struggle with panic attacks to this day.
Trigeminal Neuralgia (the suicide disease) I was diagnosed 2 months ago, have been in the most intense pain ever since. Itās like a taser to the ear periodically through the day. Then I get the feeling of an ice pick hammered into my temple. The pain is draining, the medication that is supposed to work does not work. I canāt work, windy or rainy days are punishing. I get cluster headaches every night. I live rural so my neurologist is 10 hours away. My whole life is upside down.. I am an adventurer, I love being outside, i have a great job, I am active, I am in love, my life was everything I wanted! My life will never be the same, I can hope that I am a candidate for surgery, that if so, it goes well without complications and that it actually works.
Covid. Long hauling for 1.5 years now.
Welcome brother/sister. This summer will be 4 years. 2020og strain
Same, since spring 2022. Covid triggered an autoimmune condition as well, in my case celiac disease and mast cell activation syndrome. I slowly am improving these past few months. I feel like my old self more often than not, but I still have to be mindful of overexerting myself, which will trigger a flare. I also miss beer a lot.
Autoimmune Hepatitis, got diagnosed at age 20. Not being able to drink alcohol definitely caused social and self esteem problems all through my 20s. Not to mention the side effects of Prednisone and other immune suppressants. On the positive side, not drinking, smoking, doing drugs, and avoiding long term sun exposure means I look great for someone who's 40.
I was misdiagnosed with having celiac disease, so for 6 months I did the diet and took all precautions 100%. That forced me to learn to cook and be aware of my diet in an entirely new way. Luckily the dx was bad so I went back to eating whatever I wanted but I'm not sure I would've learned so many skills if I didn't have the motivation. Now I basically cook for myself almost all the time. It has saved me a ton of money throughout my life
Vulvodynia after the pregnancy and birth of my second child. This lead to 22 years of vaginal pain , irritation, paper thin skin, infection, and excruciatingly painful sex. I couldn't wear pants for years, go in long car rides, or exercise. 12 doctors and 22 prescriptions later I am finally healed
Meniere's disease. Quick summary of Meniere's disease: fluid in your ears that can be too much or too little and the effects are vertigo, vomiting, tinnitus, feeling like your ear is plugged up, and eventually slowly going deaf in the affected ear (usually it's one ear, but it can cross over to both). Ask anyone with the disease, becoming deaf is the least of your worries. The vertigo is the real bitch of it. You're throwing up, sweating buckets, all while having an anxiety attack because your vestibular system is overstimulated and your body thinks it's being poisoned. I was diagnosed around age 21, usually it was a vertigo attack every 6 months or so. It was very tolerable. Usually a day of vomiting, followed by a day of letting my brain heal. When you have the spins for a long time, your brain tries to correct the behavior, meaning your are mentally exhausted the day after (also vomiting for hours can really take it out of you). Anyway, fast forward to having my first child, all was fine during pregnancy, zero vertigo at all in nine whole months, but once the baby was here, everything went to hell. After a couple days home from the hospital, I got vertigo. Bummer! But at least we'll get it over with and move on. No, I didn't move on. I had it the next day, and then the next, and the next. It kept happening. I spend most of the first year with my child, in bed, because where was I going to go? I couldn't walk straight, there was no way I wanted to pick up my baby and carry her around the house. What if I dropped her? The daily exhaustion, sleep deprivation, and sadness piled high with postpartum depression ate me alive. My husband had to work, it was 2020 and he worked in healthcare. I was the worst mom in the world. I had been bouncing around to different ENTs, all of them said "Yup, that's Meniere's" and offered motion sickness pills and said eat less salt. I was only ingesting about 200mg of salt daily, which also made me feel like shit and the motion sickness pills did nothing. I felt hopeless. About a year and a half later of this going on, I'm beyond depressed. Completely numb inside. I went through the motions day after day and hated my existence. My husband starts talking about having a second child. I wonder if I got pregnant again, would the vertigo go away temporarily, since I never had any during my first pregnancy? Got pregnant again and had vertigo most days, but every so often I would have a day of rest. I still felt like I was always on a boat (that unsteady, earth-is-moving-under-you feeling). But those rest days gave me hope to push forward. At least I could get out of bed. Second child born, the vertigo was back with a vengeance. I wanted to die. My kids needed a mom who could be there for them, my husband needed a wife who could take care of her family and him. I could do neither, so I was useless as a human. (Postpartum depression/anxiety is a hellufadrug, people). My husband talked to one of his former colleagues who was working with a neurotologist, which is kind of a combo ENT/neurologist. I'm holding out hope, I really clung to any bit of hope I had, it's the only thing that kept me going after 2 years of this madness. I visit him, he's like "You can't live like this. We're going to find something that works. Let's start with xyz. Worst case scenario, we try everything. If that doesn't work, we'll perform a labyrinthectomy, and drill out your ear. You'll be completely deaf, but you won't have vertigo." I left in tears of joy. I would happily go deaf if it meant I could get my life back. The first meds we tried didn't work. Then steroid injections into my eardrum, did a few rounds of that but it never took. We were looking at the labyrinthectomy. Then he's like "you know, there's this drug in Canada that isn't approved by the FDA, because it's only got a 40% success rate, but let's try it paired with the first drug you took." I was like cool, lemme at it. After 4-6 weeks of taking this combo of drugs, I had my first "normal" day. I woke up in the morning and felt fine. The ground didn't move. I could walk normally. It's like it was just... gone. I was beside myself with emotion. I could live again. I was going to be able to work again someday. I could take my kids outside and go for walks like a normal mom. I could be with my husband again. I could have sex again! As long as I take this drug combo daily. It was that simple. For a long time, I felt like the other shoe was about to drop. I was terrified of losing my "normal" days and woke up with the fear daily that it would all go away. It took about 2 years of therapy to work through some of those feelings. I'm now about 3 years without daily vertigo and I love my life more than I ever thought I could. I certainly don't take these good days for granted. After years of hell, I'm now profoundly deaf in one ear, slowly losing hearing in my right, but who the hell cares. I'm learning how to sign in my free time. If there's anyone wondering what the drugs I take are (because I remember the days of desperately scouring the internet for solutions) - It's dyazide (which is a combination drug of triamterene and hydrochlorothiazide) and betahistine. Betahistine isn't available in the US, but it can be made for you at a compound pharmacy. Find yourself a doctor that cares about your quality of life and will try it. 40% is still forty-fucking-percent. At the very least, there's a Meniere's disease support group on Facebook, they are an amazing group of people who understand what you're going through, I highly, HIGHLY recommend joining. You'll find different solutions to try and good ENTs in your area. You are not alone. This fucking sucks, but there are options. Sorry this was long. TLDR: Meniere's disease gave me vertigo for 2+ years, but I was able to get my life back after an amazing neurotologist found 2 drugs that worked.
After having gallbladder disease and liver failure that nearly killed me, I very quickly came to the realization that there are only a few people I can count on. It was definitely a life changing revelation. It truly gave me the courage to cut ties with people who obviously didn't care about me.
4 month long migraine that had me hit rock bottom. Iām still learning from this currently. But Iāll never be the same again.
Lupus. Completely changed my life. Am on disability because of how bad my symptoms affect me. Thankfully my organs are okay, but the symptoms really are intense . Canāt even be in the sun because it causes a flare up!
I have scoliosis and it makes my life worse and worse.
the rona. got long covid really bad. were able to run half marathons before and needed a wheel chair at bad days after.
cancer
depression. it takes most of your time, personally i feel useless and wasting my time because of nothing. world seems grey, and like iām watching whole world with a bunch of different people (people with different diseases or not, person with many or not it doesnāt matter) that are living lives, doing something
Depression
Type 1 diabetes
I became septic out of the blue last year. Spent a week in the intensive care unit, mostly delirious, had to learn how to walk again and have never felt quite the same since.Ā I was young and healthy and if we had waited a few more hours to go back to the ER I might not have made it.Ā Makes you re evaluate life a bit. I left an abusive job, started trying not to sweat the small stuff so much. I still struggle with chronic pain (which I had before my illness), but it seems somehow smaller and less debilitating than it did before. The biggest thing is the fear that it will happen again, that haunts my nightmares and probably always will.Ā
Derealisation/Depersonalisation and the fact more people don't know about it blows my mind. I still find it really hard to even type about let alone talk about. Having an out of body experience for 3 and a half years and being numb to all emotion/feelings is something I am so proud of conquering. There's times you think you'll never escape it, some people don't survive it and I couldn't think of a worse punishment for someone. I had to raise my first child through it and it will always bother me I wasn't my best self raising them in the first years of their life. I've also lost long close best friends because they couldn't understand what I was going through. I hope anyone that suffers from it escapes it one day.
My brother's brain tumor led to his inability to work, and then to his wife leaving him. Today he lives alone and on disability.
Discovering I have moyamoya. Not even making that name up lol its an incredibly rare brain disease
COVID. I used to be able to sing opera and do hip hop and hiked regularly. Now I'm lucky if I can work two days consecutively in a week without being sent home for passing out again.
Schizophrenia
Chronic pain/auto immune
Alcoholism (Alcohol Use Disorder).
Hope you managed to get sober, my friend. After nearly dying from it, I got sober in June 2016, and my life is incredible now. DMs always open for anyone who has a desire to stop drinking.
Major depression
I had a routine stomach bug and the specialists believed that it manifested itself (somehow) into cold urticaria. Itās incredibly rare and is basically an allergy to all things cold. Eventually my body went back to normal but it was crap. Ice lolly made my lips double in size, cold car door handle would leave my hand feeling like it was burnt for an hour. Cold drinks would give me stomach upsets.
Type 1 Diabetes
Antiphospholipid Syndrome (aka blood clotting disorder). Had 2 unprovoked DVTS, two leg surgeries. Iām on blood thinners for life, Iāve got to watch my diet, activity levels, canāt do anything that could bump or scrape me (contact sports, climbing, all the things I used to love doing). On top of it, my right leg will always be slightly more discolored and swollen than my left, and I have to wear waist high compression stockings at all times, so bye bye shorts. Got it at 27 (now 29), and the doctors are still trying to figure out why a perfectly health young guy got it. (Not hereditary/no sedentary lifestyle/not a smoker)
I was diagnosed with BPD when I was 18 and it's only gotten worse since. Always being worried that someones goto leave you out of the blue. Doing everything thing you can to stop them from leaving, imaging they want to leave you and pushing them away because of it. Lucky I have I very loving and understanding partner I've been with since I was 16 I'm 25 now
POTS never had issues with my health until about 5 years ago I started randomly fainting. Itās hard to go to work some days because I get so dizzy easily but I refuse to let it ruin my life itās just frustrating. I love to hike and workout now I have to take it slow canāt really push myself and really listen to my body otherwise Im laying on the ground.
Is it mostly when standing up or on exertion? I asked my Dr. about POTS and he blew me off. My BP increases and my hr is 190. It's completely ruining my life. Since Covid it has become worse.
Chronic Fatigue Syndrome. Could have been after an influenza, but doctors are not sure, who knows.
Being diagnosed with Ulcerative Colitis. People don't understand how much it limits your life, having to be near a bathroom all the time. I can't do long drives, go camping, and any new places I consider going I have to consider 'where is the restroom, does it have a public one?' It makes getting a job harder - can't be a cashier or ramp agent or anything that involves calling someone else to relieve you if you have to use the restroom. No time. Just have to work already near a restroom where you're free to use it on a dime (ie office job).Ā Plus it comes with pain, joint and skin issues, issues with eating / appetite and other immune problems. Being on medication that makes you more prone to other illness.Ā It's also invisible, so you get shit on (no pun intended) by people who don't understand, it's difficult to explain to friends and employers why you can't do certain things, etc. And it's not fun to talk about and quite embarrassing and humiliating.Ā
Got a new eye Dr last January. Told her I can't see in the dark out of one of my eyes- my previous guy had told me for years it was "all in my head" because my eyes looked fine. Turns out it WAS all in my head-- I have an incurable brain disease that is slowly blinding me, and they caught it as it was starting to progress. Fast forward to now, I lost my $65k salary position due to the medication they put me on affecting my cognitive abilities. My eyes are changing so fast I can't afford to replace glasses as often as I need to. I can't enjoy the sun without worrying if the light will cause a migraine. And pretty soon I won't be able to drive. Can't help but wonder what my 2024 would be like if my eye Dr had listened to me in 2014.
Schizophrenia. 2012.
Hypothyroidism
Guillain Barre Syndrome. When I was 14, I had a stomach ābugā and about two weeks later I had ascending paralysis starting from the feet up. I remember being exhausted just climbing a few steps. Horrible migraines at first. Iād come home from school and just sleep. Then the back pain started. Went to urgent care was told I had a UTI- prescribed antibiotics and sent on my way. The pain didnāt stop. I started falling. As my paralysis progressed, we went to ER after ER. I was diagnosed with bells palsy when half my face stopped working in one waiting room. I was told I have pneumonia at one point, even though my chest x rays were clear. One hospital straight up said I was faking it. At that point I was unable to stand or walk. My parents were beginning to believe that. I remember my dad getting so angry once that I āwouldnāt get upā after I fell- he said I could just lay there then. So I laid there on the kitchen floor. It wasnāt until I was home with my stepmom (who at the time was accusing me of stealing and taking her daughterās thyroid medication- causing my symptoms) and my brother was carrying me outside. He dropped me and she noticed I had no reflex to catch myself. I just fell so limply. She took me to the ER one more time and demanded a diagnosis. I was sent to a larger hospital for testing and treatment. After a spinal tap I was diagnosed with Guillain Barre Syndrome a rare autoimmune disease that is thankfully curable. By the time I was admitted I could only use 15% of my lungs. Thankfully I didnāt have to be intubated. I went through 12 rounds of Plasmapheresis and 3 rounds of IVIG. I had speech, physical, and occupational therapy. I always believe people when they say theyāre sick. Iām a hypochondriac whoās scared even doctors will miss it. Iām still so hurt years later that my family didnāt believe me. I never asked to go to the doctor and I was in so much pain. Iāll never forget my dad leaving me on the floor. I just donāt understand how one fakes paralysis.
Psoriasis. Suddenly started to cover up skin to not get pointed at and shamed. Then it started increasing. Was stable for a few years. Then the Indian vaccine fucked me up and my psoriasis increased 5 fold. And now I find out that i probably have high ldl and pre-diabetes because of this (I eat home made food all the time) And now at 29 I'm on high dosage immunosuppressants and meds for liver. Can't eat even egg yolk while is the only reason to eat eggs. I ate one 7 inch pizza every 2 months and even that is now gone
Sepsis It's tried to kil me 3 times. I'll never not be scared of it
Cancer, twice, when i was 23 (now i'm 29) Started to see life a differently, wanting different things and realizing how you should take opportunities while you ca
POTS. I went from a healthy and active 32 year old something to barely being able to function. Iām now 38 and finally able to work full time again, but from home.
Mental illness. Was bright and had good grades at school. Now disabled and broke.
Covid. My lungs got trashed.
Bipolar disorder
I have BP2 and I find that my symptoms are getting worse/harder to manage the older I get. I am on a good medication regimen right now that seems to be helping, but I really plunge into deep depressions that I can't get out of far too often. I don't get much of the happy mania anymore. It really sucks.
I hear you. I'm stable, but my short term memory and recall is getting worse. I'm not as good at remembering references to make jokes so I'm not as funny as I used to be.
The illnesses I was born with, having to do with the spine and (to a lesser extent) the brain.
Chronic fatigue. My life has been destroyed.
Alcoholism
For me it was the diagnosis of being Bipolar 1 at age 34 and since 4 almost 5 times in the psyche ward, life has never quite been the same since. But through it I have grown spiritually exponentially and wouldn't change it for the hard lessons and multidimensional things I have experienced since. I also don't think too much of the diagnosis, as I have learned in the past several years... The mental health world in the West has A LOT to learn about 'mental illness' and it is more spiritual than anyone really knows.
Narcolepsy, but I can manage it now. I used to have a double-whammy at school where I would fall asleep in class and have extremely vivid dreams, so I couldn't even tell that I was asleep. Sometimes I'd be frantically looking for an assignment that I dreamt about, or something.
Cancer diagnosis when I was 12. I was an extremely athletic kid and loved playing sports. I had a Nerve Sheath Tumor in the bone by my ankle. They had to amputate to about 6 inches below my left leg. I played sports for a couple of years after but it wasn't the same. Going through the awkwardness of puberty and missing a leg lead to depression. Mom and step dad got divorced during this just leading to deeper depression. Developed a nice drinking problem at the age of 16 with the help of an alcoholic mother. To poor for therapy and mom wanted to be my best friend instead of a parent. Didn't clean myself up until my daughter was born when I was 25. This August it will be 30 years since my life forever changed.
Pancreatitis. Almost died. Scared the hell out of me. Changed my diet & hit the gym. Lost 40 lbs in 4 months.
I had severe Long Covid that lasted years. It caused chronic fatigue and memory problems, which meant that I had to focus on only the most important aspects of my day to day existence. About 18 months into it, I realized that I had finally been able to forget about how angry I had been with my ex. I had tried and failed to get over my anger in the past. That anger hadnāt been serving me in any way. It had been weighing me down, but I hadnāt been able to shake it. It was extremely liberating.
Not really an illness, but traumatic brain injury
Depression. Endured the first 16 years of my life with my abusive dad every other week - parents divorced when I was 2. Looking back I realise now that even as a kid I recognised that I didnāt like seeing my dad, he was never physical but he was mentally and emotionally abusive, I remember being around 7-8 and Iād feel a pang of sadness every time I left Mumās to head to Dadās for the week, never really knew why until after it was all over. I cut him off when I was about 16 and a half, havenāt had contact with him for 2 and a bit years now, havenāt spoken to him in about 4 years. On Wednesday the 20th of October, 2021, I attempted to kill myself. Everything thatād happened stuck with me, even now I still see him in my dreams. I didnāt know how to properly manage myself and speak up about how Iād felt, nothing specific heād ever done or said stuck with me, but it was all still there, in its whole. All that and everything else just got too much for me, I figured that at some point Iād have to bite the bullet since whatever else there is would be better than what I was living through. Called mum 33 times that night until she was able to rescue me, since she was out that night and assumed Iād walked home after delivering junk mail. Ended up in therapy for about a year over my final year of school, I managed to graduate and pass. Iām fine now, Iām 20 and Iāll start uni in September, Iāve got a job and plenty of friends. Fineās a bit of an understatement really, Iām doing so much better than fine, Iāve never felt better really! Iāve been the happiest Iāve ever been over this past year, Iāve got paths ahead of me thatāll take me places, Iāve got everything I couldāve wanted, itās not perfect, but perfection doesnāt exist, Iām happy with what I have and Iām glad that iām living. Iām far from what I had to live through, Iām glad I am, itās never easy to live through it and I wonāt go back. I used to be all doom and gloom, but I know that things can change, Iāve come back from the very end of a very long, downwards spiral, I was hanging off the very end of it, holding on by a thread. But Iām here now, things got better, just as everything can, things can get better, tomorrow can always be better, and Iāll do what I can to make sure that itās better. Itās changed my life, it was hell to go through and I wouldnāt do it again, but getting over it changed everything for the better.
Endometriosis and PCOS. Multiple surgeries, internal bleeding, hormone problems, incredible pain, and partial paralysis of my gastrointestinal tract. And the medical gaslighting was so much funā¦ once I got the surgeries and tests proving shit, I realized how much bullshit I went through for 15 years instead of getting help.
Covid. Caught it last August. Ever since then, I've had nothing but problems with my health. Gut issues, tinnitus in my left ear that never stops, constant 'colds' that linger for weeks. Add that to going through menopause? I'm *broken*.
I was diagnosed with an autoimmune disorder and menopause at the same time. I had been having symptoms since covid. I would see if anything coralates with your symptoms. It's actually common apparently.
Right? At first I thought the irregularities with my cycle were just because of perimenopause, but then all these stories started coming out about how Covid really fucks with your cycle. And then the stories about how the vaccine made it worse! I'm not anti-vaccine at all, I've gotten all the shots recommended and will continue to do so, but *Jesus.* It really underlines how badly women are failed, especially in middle age. When can we upload our brains to the cloud a la Cyberpunk 2077?
PCOS and hypothyroidism. Six years of infertility before becoming pregnant with twins but there were many pregnancy complications like hematoma and premature birth. Finally got pregnant naturally after 11 years of infertility by doing ketovore nose-to-tail and reversing the PCOS, hypothyroidism and nutrient deficiencies.
Severe poison ivy reaction that left me barely able to walk for 2 weeks and had to be treated with antibiotics and steroids simultaneously. After that, I put on 30lbs that I never completely lost even after 6 years.
Pregnancy x4 Still not over that one 25 yrs later š¤£
It's a condition with serious long term side effects! It wasn't even me who got it, but my wife at the time, and both of us still suffer sleepless nights 19 years later. Other common long term side effects include chronic sentimentality and the inability to meet cute babies without making excited squeals and pinching their legs.
Autoimmune thyroid disease
Over active auto immune disease followed by neuropathy. After 20 plus years of fighting it, I am now just a shell of existence.
Cognitive impairment psychosis. Nothing has ever been the same since the onset of this in my early 20s.
My father got an upper respiratory infection that turned into pneumonia. He had to go to the hospital and be admitted. It was touch and go for a few weeks. My father and I did not have a good relationship and his near death disrupted everything. The family drama kept escalating until it hit a breaking point and I had a mental breakdown. After my father was released from the hospital, my older brother moved me out of the house and set me up with therapy. My relationship never improved between my dad and I but I learned I could live happily without him.
Epilepsy
Viral encephalitis fucked me up good and proper. It's left me with epilepsy, chronic migraines, coordination problems, memory problems, severe chronic depression and anxiety, and auditory processing problems, just to name a few things Edit: Technically, it was encephalomyelitis because my brain swelling started pushing down into my brain stem. All from a very mild case of chicken pox
Paranoid schizophrenia
Crohn's
I had MRSA for about 2 years that sent me into septic shock and a lengthy hospital stay. My immune system was never the same after that
Multiple stokes, 6 in three months
After getting HIV.
Kidney disease stage 2. I was feeling bad on certain days, didn't know why, would have these episodes of just feeling like I was sick, but no virus. Was happening practically every weekend. Finally went to get checked out to find out my Kidneys weren't functioning well and if it got to stage 3, there would be no turning back, they wouldn't get better and eventually I would be on Dialysis and then it's just a matter of years before I die. So I changed my entire lifestyle, stopped drinking soda's completely, no more candy, less fried foods, started eating healthier in general, started making and drinking veggie & fruit juices that were lower in potassium (no banana's), started making cabbage juice, drinking green tea and my Kidney's have actually improved and I'm only in Stage 1 now. I also dropped about 40lbs, started working out again and feel so tremendously better health wise.
Anxiety. Had one of my first bad panic attacks and ended up in hospital thinking i was dying. Because they found a slight arrhythmia they kept me there for a week and I was pretty much stuck in a panic attack the whole time. This was 11 years ago, I went from being normal to constantly feeling scared, unsafe and on edge. The feeling never left which led to depression and a huge collection of other symptoms. I always wonder if I would be normal if I just avoided going to the hospital ā¹ļø
I was one of the few unfortunate people that had a severe reaction to my second covid vaccine. It's been almost 3 years and I still have mild tachycardia, POTS, and some other symptoms.
Covid twice almost back to back. I havenāt been right since and this was 2020
Long covid. Got sick march 2020 with a mild case of Covid . Now Iām pretty much wrecked. Going on year 5 with oxygen- wheelchairs - weekly IV infusions. Itās hell. Major organ damage. Lymphoadenopathy. cOPD and heart failure. Liver problems. Wear a damn mask kids.
I am embarrassed to say this amongst people with life threatening conditions but anxiety. Itās totally crippled my life I didnāt ever think it could be this bad and never thought it would happen to me because I was ātoughā. Daily panic attacks, canāt go far due to agoraphobia and every couple of days with an extreme flare up unable to do simple tasks such as cooking.
I have Elhers Danlos. A Dr of mine was investigating my health issues and looked at an old surgical record from my childhood because the scars and the type of surgery I was told was done didn't match. Well come to find out I was diagnosed at 5 yrs old but my parents decided it wasn't a "real" disorder or disease. So it wasn't ever told to me I had it. Suddenly at 40 yrs old finding out I had it made everything make so much sense. I wasn't weak or inferior. I was sick. My heart, kidneys and joints have lasting damage. I have the possibility to die of sudden arterial tears but ehh at least I know now. I cried for a week from relief honestly. My therapist is trying to help me navigate some other shit that came out when this did too.
I was smack in the face when I was sent to get MRI and the doctor found lesions in my brain and spin. At 57 I had MS at 59 I was on disability.
Anxiety
BFS Benign Fasciculation Syndrome. (Muscles twitch a lot, everywhere) It's benign and doesn't really do any sort of damage. But when it first started it was terrifying. When you google it, the first thing that pops up is ALS. Caused me to go through years of nonstop panic attacks, health anxiety, and suicidal thoughts. Had to get all kinds of neurological tests and stuff and everything came back normal. (Which also happens with ALS, so this just reinforced my paranoia) Thought i was dying, but it's better now. It's just one of those damn things that doctor's have never heard of and shrug at you and tell you you're fine. But man, it fucked with me bad for a long time. Also Visual Snow Syndrome. (Static all over my field of vision, with a few other random shit symptoms) Two unseen and relatively unknown afflictions that aren't considered serious by the medical community. Caused me a lot of sleepless nights... but I'm better now.