Do You Know Anyone Who Has Had Their Life Permanently Changed Due to a Health Condition?

Besides tinnitus/hyperacusis, there is a huge list of other non-cure able/treatable conditions that can not only severely impact someone's quality of life but sometimes ruin it completely.

I personally don't know anyone who has had anything happen to them that has been "life-ruining" besides people I know from high school who got in fatal car crashes from drinking/driving. A couple of my parents' friends who have had cancer but most recovered.

How about you guys? Doesn't even necessarily have to be "medical".

It's easy to get lost in our own problems, and sometimes what it takes for me to snap out of my own "poor me" cycle, is knowing I'm not the only one in this world who is suffering.

 

I have sleep disorder that fragments my sleep so I never feel rested. I used to think it was just stress from school, then adjusting to my new job, but it turns out I always feel like I’m at the end of my rope regardless of circumstance. I’ve started trying treatment, but idk if it will make a real difference. It’s invisible outside of the bags under my eyes.

Many people have invisible health conditions that impact their lives, and you would never know.

 

I have debilitating OCD, not ha ha I like my things neat & tidy I'm-so-quirky OCD, but OCD that has prevented me from living a real life because I'm terrified all the time. Treatment has helped me, but even with this improvement, my life is still extremely limited and I live in a world ruled my fear.

 

I also have ADHD (inattentive type, what used to be called ADD). Nearly failed out of university before I got treatment. Causes a lot of issues with executive functioning. Basically with ADHD, the part of your brain that allows you to put intention into action, the frontal lobe, is impaired. Medication is a game-changer but it's still a significant effort. Has defo led to low self-esteem for me (and many other people with it). I don't usually talk about it much tbh because people have a lot of misconceptions about it or think they can buy your meds...

I was also diagnosed with Generalised Anxiety Disorder 4 years ago which I manage to control succesfully with meds although it can be difficult to deal with at times.

 

I developed PTSD, after spending a time in Vietnam. I tried medication but it never really helped, did counselling, which the counsellor said I wouldn't change. So after years of drinking and drugs, I finally realized only I can change, which I feel I have accomplished. People still make me wary, so I avoid most of them. But I'm ok and so am I.

 

@Orions Pain said...It's easy to get lost in our own problems, and sometimes what it takes for me to snap out of my own "poor me" cycle, is knowing I'm not the only one in this world who is suffering.

This is my first post in quite a while...that quote struck a note with me though...I don't post because I usually come here when I'm in a "poor me" crash (I just don't share it much anymore...seems to turn most folks off) and just reading of other people dealing with the same (or worse) situations helps me get through. Also the replies here represent many of the realities of my life. ADHD from childhood (Ritalin at 8 yrs old), PTSD from early teens (wouldn't wish what happened to me on my worst enemy), OCD from who knows when and PVCs (irregular heartbeat) all resulting in major anxiety and self image problems...oh yeah...can't leave out the T. Although I have spent many years trying to deal with all those acronyms (did the drinking/drugs thing as well) and still be able manage a smile, I think I can safely say that overall it has ruined my experience here on this planet. So @Orions Pain please know that you are in good company. There's an old saying...Misery loves company...no wonder this forum helps so much.

 

One of my best friends has a disease called Myasthenia Gravis.

It is a degenerative disease where you slowly rot away, losing speech, eye sight, and all motor functions, etc. It's brutal. There is no cure.

She is so strong, courageous and kind.
I have seen a lot of suffering in my life. The latter example is one close to my heart.

 

Sometimes I sit and wonder about mankind. Going back to time before domestication, I wonder if those humans suffered from what modern man suffers today? Did they have the diseases we have in modern times, or because of their lifestyle and more of pure surroundings they didn't suffer from the diseases of modern man. Was tinnitus known, did they suffer with cancer? They changed through evolution, domestication of grains, animals and forming living in close proximity of each other. Did that lead to sickness?
I need to turn my brain off.

 

Did China let the virus out and why?

 

OCD here also. Med resistant. Trying microdosing of some stuff at this point.

 

Yes.

OCD
Lyme and co
Atrial fib, in need of heart surgery, lung, joint and bladder symptoms

 

MicroD with Lucy?

 

I know a woman who got blind in her early 30s and gave birth to her child without having ever seen the baby. She's living quite a happy life 30 years after, even travels, does a lot of things, goes to the beach etc.

 

Ear pain, arthritis, some chest pain that a cardiologist ruled out heart disease/issue and several others.

Tinnitus and ear pain are the worst ones - FOR ME. I am not speaking for others. I don't know if I need a disclaimer but I thought I'd mention...

 

Yup. Hydrops has destroyed my life. 33 years old. MBA graduate from a good school. 90k a year plus career gone in the blink of an eye. I hope FX-322 actually works but I am sure it wont be a cure all. I haven't worked in over a month and have no idea how I ever will again. No SSI or disability, just screwed.

 

If Hydrops occur in fetuses, how does a man 33 years old have that condition? Were you born with that? I'm only curious as I don't quite understand the duration of that disease @Jrblovsky.

 

To Elmer B Fuddled:

In 1600 the average Life Expectancy was 37 and in 1900 it was only increased 10 years to 47.
It was only in the 20th Century that the Life Expectancy was increased 30 years to 77 (or thereabouts).

Humanity simply did not live long enough to experience many of the ailments that are prevalent today.

I often consider how much quieter the 19th Century must have been. With the exception of wars, the populace was not exposed to the enormous amount of noise and toxic substances that we daily are subjected to.

 

Fetal hydrops is different than cochlear hydrops.

 

I am not that familiar with hydrops and, assuming you do office work, how would it ruin your career?

 

Hi @Jrblovsky! Have you considered seeing an upper cervical chiropractor?

I hope things get better for you!

 

Hi,

I am seeing an upper cervical chiropractor. To answer your question Juan, I didn't do office work but even that I would struggle with badly. The tinnitus is experience is very loud and piercing all the time. I went from zero tinnitus to crazy noise, fullness, and ear pain almost overnight. My hearing threshold continues to rapidly decline for unknown reasons. When your doing calculations in engineering and make a mistake, people can die. I haven't worked in a month and ha e no idea how to ever go back. The noise is driving me batshit insane.

 

My best friend drank his pancreas into pieces.. He now has the chronic health condition pancreatitis among other problems. It seems similar to tinnitus in many ways. Constant, med- to low-intensity abdominal pain that feels like being hungry (as he describes it). Uncertain future. Nothing to be done.

He's also losing sensation in his whole body and he doesn't know why yet.

It's so much worse than my problems.

 

How much did your friend drink? I have friends who still feel like they’re invincible and drink almost daily (late 20s to early 30s), not to mention weekend binges. Combine that with taking Asprin like candy. I worry about them a lot for this exact reason but I think most people don’t really understand the dangers of their activities before it’s too late.

 

My friend is living with terminal cancer. She is having palliative chemotherapy, she still gets about, shops, cleans, works and looks after her 3-year-old son. The tumour grew on her sciatic nerve and caused her to develop foot drop and other things and therefore her mobility is very much reduced however she is still managing. Don't know how long she has left. My problems are so insignificant compared to hers xx

 

@SugarMagnolia, I can sympathise with you entirely.
My partner was diagnosed with OCD since he was 14, so I know how tough it can be.

People always joke and say how OCD they are, but real OCD is debilitating, and certainly no joke.

However, he is now 31, and though he still finds some things hard to deal with - he is mostly better. Even in five years, I've seen massive improvements.

There is always hope.

Steph <3

 

@Kirstystired

I'm sorry to hear about your friend.
Sounds like she is an incredibly brave woman.

<3

 

@Orions Pain

I have a rare disorder called Paramyotonia congenital.

It's genetic. My aunties, grandma, and mother all have it too.

It affects the muscles. It's hard to explain really. It's like constant muscle resistance. Medically it's the inability to relax the muscles. They're always tense.

I get stuck to things like cups and cutlery. How I describe it is like having cramp but it's not painful. I fall up the stairs a lot because my legs just stop - but that's only if I run, because any quick movements tenses the muscles too quickly.

It's not debilitating, more an annoyance - especially when lying down at night when everything cramps up and I get stuck. It also means you have cramp in weird places like your eyeballs and tongue. Sometimes my eyes literally become stuck!

However, because my body is always tense, I become tired super quick. Also food really affects it. If I eat junk food, the next day I'm crippled because I'm so cramped up.

There's no cure or treatment for it. It's so rare, they don't know much about it.

(if anyone else on here has it, would be awesome to talk about it!)

Steph

 

Oh yes, she is a beautiful and courageous woman inside and out.

I will miss her dreadfully when she goes to sleep for the last time.

Xxxx

 

@Kirstystired

I too am so very sorry to hear about your friend.

 

Sadly, a friend just had a stroke and went completely blind and lost mobility on his right side (arm and leg.) He was a retired police officer, loved to hunt, fish, photography, the outdoors. He was very active. Now, he's going through the roller coaster of depression and anxiety. So sad. I pray for him and his family. It is really difficult for them right now.

And some of you know that my niece passed away at the early age of 30, just 2 years ago. She was diagnosed with cancer at age 15. Really changed her life and the life of all of us who loved her.