Who else here is in their 20's?

[maggie3]

I love this plan and it is my plan too. I feel like this fatigue has been there and slowly started getting worse way back since end of high school.
I also love how I used to be the most motivated person despite everything because I love what I do, and all of a sudden when I couldn't push myself through the mud anymore I 'just need to motivate myself'.

Thanks ornament making this thread, I’ve been thinking about doing the same for a while.

Things started going wrong for me at around 24, then I got CFS/Fibro while still working at 25, then crashed into full ME mode at 26 and now I’m 28.

It’s really tough missing the best part of your 20s with this. I try to be really grateful for having an active teenage years and doing lots of cool stuff from 18-24 as others are not so lucky.

And I fully plan to get well and have an epic 30s

Same here, I have to truly believe that I will fully recover and live a wonderful life again! I also have to feel grateful for all the amazing things I was able to do before becoming ill, although I think that easily the hardest part of all this too, almost like mourning my life old traveling and being active.

 

[SlamDancin]

Same here, I have to truly believe that I will fully recover and live a wonderful life again! I also have to feel grateful for all the amazing things I was able to do before becoming ill, although I think that easily the hardest part of all this too, almost like mourning my life old traveling and being active.

I think about this often. I’m 28, almost 29, and I started having symptoms (called IBS but as other posters here have surmised I think it was bowel ischemia) and was diagnosed with idiopathic scoliosis at 10 or 11 years old. So I’ve lost a lot of life at this point if I choose to look at it that way.

However, ever since I deduced that my CFS was probably related to blood flow, CSF, lymphatics and autonomic dysfunction due to structural spinal problems such as scoliosis and I suspect perhaps a Chiari malformation, I’ve had remarkable progress in gaining a quality of life I haven’t had for years.

While my energy envelope is still quite narrow and I’m brain fogged and fatigue almost every day, I haven’t barely had any serious PEM in a couple months. I know I’m having PEM when the cold sweating, stomach aches, extreme exhaustion and autonomic problems start acting up, etc.

Very soon I’ll write up how I’ve done this. In about 6 months I’ve gone from serious to mild ME/CFS I’d say. And I’ve tried soooo many things in the past that did nothing or made me worse that I know there’s a light at the end of the tunnel for us.

Keep ya head up!!

 

[maggie3]

23. It started two years ago.

In about the same boat, 24 now and started about 2 years but fully hit about 14 months ago now

 

[mattytoo]

I'm 26, started to get sick at 19. I definitely had to mourn the years I've lost and the future I hoped to have. I still do, but less often these days. I've had a constant, slow, downward trajectory so I've been through that cycle of having to give up my dreams & accept a new reality so many times... But idk, I feel like you learn to adapt, eventually. There's enough good in my life if I live it one day at a time. No long term plans. I don't expect to get majorly better, not anymore (or maybe I do, a little, eventually, but it's almost like a passing daydream). I don't deny myself little pleasures, if I want that chocolate & I can safely eat it with my dysphagia then I'll eat the damn chocolate 😂 If I get better I know I'll be able to jump back into the kind of lives others lead in a heart beat, but if not, oh well. Today is good enough for today

 

[SlamDancin]

Today is good enough for today

That’s that new Ice Cube song right?

 

[scienceshea]

31 now - but started dealing with this just before my 29th birthday.

 

[JinZ]

31 now - but started dealing with this just before my 29th birthday.

You should start a 30s thread : ) and I will join you in a few years.

 

[invisiblejungle]

That’s that new Ice Cube song right?

lol maybe not enough hip-hop heads here to get the joke?

I'm 35, been ill since 23. So that's 1/3 of my life. And my decline was swift, almost literally overnight. I'm pretty much homebound, have a feeding tube, can't tolerate much activity besides reading. Honestly, I'm surprised I've kept going for this long...

 

[SlamDancin]

lol maybe not enough hip-hop heads here to get the joke?

I used to use some classic HH album art on here and I guess unsurprisingly there are more heads on here lurking than you imagine.

 

[Fuluf]

I'm 23, severe symptoms began 3 years ago, 2 years of pure hell. Not CFS particularly but some weird chronic infection no one believe in yet but is terrifyingly real and hard to treat. There are signs I had it since birth so my motivation to treat it is beyond high as I want to see what the life is all about. I will get there.
It's so frustrating to be in your 20s and be homebound especially in summer with inability even to read or follow the plot of TV series. It's very creepy to watch yourself go insane with a brain fog and weird mental symptoms unable to do anything about it while your friends are building their lives, making important decisions. I lost very interesting job and relationship opportunities.
But there is a wisdom and new understanding coming in a package with long term debilitating chronic illness. One thing that helped me is realizing that there is indeed a definite root cause of the illness, something real is causing all these symptoms and if it's real there is a real chance of me finding what is wrong, I aimed for cure. I see lots of people here hoping for medical community to figure it out, but most modern drugs are just for symptom management eg antiinflammatories but what is causing the inflammation? Just my opinion but lots of cases are chronic infections hiding in biofilm

 

[maggie3]

@Fuluf, im 24 and symptoms also started about 1.5-2 years ago. I don't seem to fit into the classic case of CFS either and also have rather intense viral (or other pathogen) infection like symptoms. I have also found peace in that understanding, that there is absolutely something that is causing this to happen and that I will eventually discover what that is. Doesn't make the experience any less frustrating or isolating feeling. I also had to leave a job and city I loved as well as the people there that brought me so much joy and happiness, but I have to believe there is a way out of this and will be able to return back to that with this experience in the past.

 

[GlassHouse]

I’m 29 and got really ill when I was 21. I’m in the atypical subset who gets worse over time and has pro-inflammatory cytokines increase each year rather than the immune exhaustion (although NK cells gave up, LU30 = 8 in 2014).

I’m definitely getting worse at a much slower rate than when I was working. I used to get hospitalized every couple of months with organ failures or sepsis. And my primary refused to help me leave work, saying it’s all, “very rare coincidences,” for someone “so young and healthy.”

I wish I’d pushed to get to an expert much sooner. They were so understanding and they helped me leave work. I won my disability cases through ssdi and private insurance on the first application when I was 26.

I have since fired my primary. What an absolute waste of energy!

I used to believe I could get better in time to have kids but I’ve been letting go of that hope because I think it emphasizes time (how long we’ve been sick, how many fertile years are left, etc.). Thinking about the time lost makes me anxious so I try to only focus on one day at a time.

 

[GlassHouse]

I'm 26, started to get sick at 19. I definitely had to mourn the years I've lost and the future I hoped to have. I still do, but less often these days. I've had a constant, slow, downward trajectory so I've been through that cycle of having to give up my dreams & accept a new reality so many times... But idk, I feel like you learn to adapt, eventually. There's enough good in my life if I live it one day at a time. No long term plans. I don't expect to get majorly better, not anymore (or maybe I do, a little, eventually, but it's almost like a passing daydream). I don't deny myself little pleasures, if I want that chocolate & I can safely eat it with my dysphagia then I'll eat the damn chocolate 😂 If I get better I know I'll be able to jump back into the kind of lives others lead in a heart beat, but if not, oh well. Today is good enough for today

I relate so much to what you’ve said. I tell my husband that it’s a never ending cycle of grief because you’re constantly mourning new losses as you get sicker each year

 

[invisiblejungle]

I relate so much to what you’ve said. I tell my husband that it’s a never ending cycle of grief because you’re constantly mourning new losses as you get sicker each year

This is a really good article about chronic illness written for social workers:
https://www.socialworktoday.com/archive/070714p18.shtml

"Imagine a person with a chronic illness as forever walking down a dividing line between the past and the future. Looking backward, he can see everything illness has taken from him or has forced him to relinquish. Looking forward, he can’t see anything quite clearly. There’s no going back to the past, and the future is uncertain."

"Because chronic illness can strip away many of the characteristics that form identity at the same time it causes disability and loss of livelihood, the totality of the losses is potentially enormous. Since these losses aren’t tied to one event but are multiple and repetitive, the ill person may live with perpetual grief, known as chronic sorrow or sadness."

"Grief associated with chronic illness, however, is more complex for many individuals, she notes. For people who are chronically ill, the losses are multiple and permanent and therefore difficult to resolve. Because these losses are unending, they’re known as infinite losses, according to Tecala. “They can affect individuals’ quality of life forever,” Sloan adds."

 

[Jackb23]

I’m 22 and I constantly ponder the question that if I could put myself under into a medically induced coma and come out with no complications (very hypothetical), would I do it if it meant waking up when me/cfs had found a treatment? That then begs the question of for how long would I be willing to be under for?— 2 years, 5 years... 20 years? If I woke up in 20 years at the age of 42 and I could be completely healthy, would I be able to cope with all of the lost time? Is there truly beauty in the struggle? I don’t think I could put myself under for 20 years, but I would not mind several bouts of missing 2-3 years.
It feels extremely self centered, but i often can’t stand that at the ripe age of 22, I am slowly withering away while all my friends are just starting to lace up their boots for the greatest excursions that they’ll ever take part in during their lives. I can’t stand to be the last crab in the bucket and watch all the others get out one by one, not that I try to hold them back.
An old soul... that’s what I’ve been called by those closest to me that know about my day to day, hour to hour and sometimes minute to minute struggles. Is there value in pain? Is there reward in journey of coming out on the other end? To me, being sagacious at the age of 22 caries no currency. I can’t cash it in for anything, I can’t be more equipped at certain tasks due to how cumbersome my circumstances have been. I truly don’t see the reward.
I think death is hard for everyone, but the person who passed. But this is different. In this instance we have to watch ourselves die while having to answer speculation and questions from others about why we don’t appear as alive or successful as we should be. In this instance we are well beyond dead, but no one knows it. No one is in pain because, 1: They don’t know that on the inside we’re rotting and have already died. And 2: were the only ones who have to watch the torment and mourn the death of our very own selves. And we have to do this from the vantage point of invisible suffering

 

[Kenshin]

It feels extremely self centered, but i often can’t stand that at the ripe age of 22, I am slowly withering away while all my friends are just starting to lace up their boots for the greatest excursions that they’ll ever take part in during their lives. I can’t stand to be the last crab in the bucket and watch all the others get out one by one, not that I try to hold them back.
An old soul... that’s what I’ve been called by those closest to me that know about my day to day, hour to hour and sometimes minute to minute struggles. Is there value in pain? Is there reward in journey of coming out on the other end? To me, being sagacious at the age of 22 caries no currency. I can’t cash it in for anything, I can’t be more equipped at certain tasks due to how cumbersome my circumstances have been. I truly don’t see the reward.
I think death is hard for everyone, but the person who passed. But this is different. In this instance we have to watch ourselves die while having to answer speculation and questions from others about why we don’t appear as alive or successful as we should be. In this instance we are well beyond dead, but no one knows it. No one is in pain because, 1: They don’t know that on the inside we’re rotting and have already died. And 2: were the only ones who have to watch the torment and mourn the death of our very own selves. And we have to do this from the vantage point of invisible suffering

I'm 31, twenties were mostly spent in a dark room in pain.
You're asking the right questions and seem wiser than I was at your age.
An astute mind is always helpful, true it would be far more in use if you were healthy, but in this state of illness you will find more ways to adapt and cope mentally.
Our objectives have changed, and so must we. Keep observing reality with an unflinching eye.
Master whatever domain you inhabit. Better to rule in hell than serve in heaven.

 

[frozenborderline]

24. It started w Lyme summer 2016 , when I was 21 , downhill since then. Know I haven’t lost as much as some but it feels like a lot, a total gut punch, I was so happy and active before and now I am less than nothing. I didn’t even finish college , I miss all of those friends

 

[ChrisD]

Hey guys, I've just created this Facebook group: https://www.facebook.com/groups/462232687892296/

Only me in it at the moment so please come and join me!

 

[sb4]

Hey guys, I've just created this Facebook group: https://www.facebook.com/groups/462232687892296/

Only me in it at the moment so please come and join me!

Joined but to be honest I haven't used facebook in years.

 

[Macatas]

18 year old here, started when I was 10. It definitely doesn't discriminate by age!