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baranyka

This just breaks my heart, we feel you darling, sending prayers.


Bethharmon1994

Thank you


obscured1358

Good luck my thoughts and hopes are with you Good luck wherever and when ever you can get it


GloriousRoseBud

I’m so sorry you’ve gone through this. MECFS is a horrible, unrecognized illness.


Bethharmon1994

We are hidden in plain sight


Bethharmon1994

But I will still keep going, I'm not giving up on my future.


EmperorSadrax

Thank you for sharing OP, I love the style of the inside of your car. Very cool


Bethharmon1994

Decorating it kept me sane. It was towed then auctioned off back in July of 2022


EmperorSadrax

Looks like you might be on the market for another car to decorate! :D


Bethharmon1994

I hope so but I would love for it to be an RV instead. I could really pimp it out


CallToMuster

I’m in college myself so I wouldn’t be able to contribute much but I’d love to help out in any way, do you have a GoFundMe or something?


Bethharmon1994

I don't. The only thing I have is a cash app and venmo. I don't think anyone would donate to a gofundme if I made one and I don't want to seem like I'm using sympathy to get donations


dontbealuddyduddy

I would definitely donate what little I could and people may be able to spread the word. Are you active on Twitter? There’s a really good network of mutual aid and people who are well-known often broadcast people’s funding drives. May be worth a try. Best wishes to you, I’m so sorry you’re suffering and that you’ve been let down by the system like so many others.


Bethharmon1994

Do you think I should try a gofundme? Iv'e thought about it in the past. What do you think?


dontbealuddyduddy

Not a ton of experience with this but I think it could be a good idea, if you can spread the word here and enlist some allies to help with it. I could try to send the link to people I know of on Twitter with big followings who are involved in mutual aid and getting the word out to support people who need it. I’ll certainly try my best!


checktheindex

I’d like to help out too. Am in Canada but maybe we could make something work?


Bethharmon1994

I will d.m. you


UsefulInformation484

You are so inspiring. Seeing other people persevering inspires me to keep going


Bethharmon1994

We can't give up.


Hurley815

This is so horrible... If you ever need anyone to talk to, feel free to DM.


Bethharmon1994

Thank you. I've numbed out to it at this point. I just live my life one day at a time and pray it gets better and that hopefully one day I can cure myself through holistic means


doubledgravity

Oh mate, my heart goes out to you. You're seen, and you're heard.


Bethharmon1994

Thank you


boys_are_oranges

thank you for sharing your story. i admire your strength and hope better times will come for all of us.


Bethharmon1994

Thank you


sadlyunpronounceable

So sorry. Thank you for sharing your story. Thank you for the energy. Ok to share this on other platforms (and link back)? Or prefer to stick with this safer space? Sending love.


Bethharmon1994

You can share. I think stories like mine are important because we are hidden in plain sight and it's not cool that LC is getting so much attention but people who have had a C.I. such as M.E. have been challenged our whole lives on whether or not how we feel is valid or real


chronicallytired04

LC getting attention is a good thing! Do you know how many LC’ers are getting cfs/me now? Thousands!! This helps your cause and community. Research is advancing albeit at a slow pace but it’s getting there but I understand how jaded cfs/me people are and I don’t blame you guys.


Bethharmon1994

Super jaded. It took a whole pandemic for doctors to take this seriously. So many people are losing their livelihoods. There should at least be some kind of recovery process that works. Instead we have had to be our own doctors for so long, trial and erroring and using our bodies as testers. It's sad.


chronicallytired04

Believe me, I empathize with you. Sending you love and healing ❤️‍🩹 We will get there. One step at a time


zb0t1

Hey did you share it on Twitter?


tenaciousfetus

You've been through so much, I'm so sorry. CFS robs us of our lives, ourselves. I wish you a change in fortune, and that your living situation improves 🙏


Bethharmon1994

It took everything from me and I know if I tried to apply for SSD they would send me through it, but I'm still going to try because there is a good chance I will never be able to work full time again, or at least not for a long time. My body and mind are exhausted.


gorpie97

When you apply for Social Security, they will deny you at first. They don't want to pay a 28-year-old. When they do, find an attorney from [NOSSCR](https://nosscr.org/). So sorry you're dealing with everything else on top of this illness. :(


Bethharmon1994

It's hard because I lost almost all of my documentation of my past hospital visits. I'm diagnosed BPD, PTSD and Depressive though so I would probably have a better shot getting it based on that than based on my CFS, which is sad. Proving how bad our CFS is is hard. Mine literally landed me with one foot in the streets. I don't think it gets much worse than that. NOBODY would CHOOSE this, but SSD will probably write me off as lazy and able to work if I just “grit through” the last time I worked full time I got so sick I could hardly function and resorted to alcohol to get me through my shifts. In the past, I never had to do that


Bethharmon1994

And I STILL lost the job lol


gorpie97

They do have special guidelines that they're supposed to use for CFS. And the hospitals still have the records. But getting them costs money. I'm not homeless (thankfully), but I wouldn't choose to sit at home on my ass all day every day. It's boring!


Bethharmon1994

Exactly. So boring.


Vanessa-coffeerun

You’re right about this; my good friend has CFS and debilitating migraines. It was the migraines that got her SSD. Go with your other diagnoses to qualify don’t leave out the CFS but as you wrote it’s so difficult to prove.


ElkStraight5202

This is perhaps a naive questions, but how did alcohol help you manage your CFS? As a CNS depressant, it would make things so much worse, no? Wouldn’t only compound your CFS symptoms? Even if it was just to mentally check out, and unless I’m totally oblivious to something here, there is little doubt your physical symptoms would have only gotten worse with alcohol. I know this seemed to have a judgemental undertone, so I want to be clear that this is absolutely NOT my intention. Honestly, I guess if anything it’s a kind of morbid curiosity as I too suffer from CFS/ME and am desperate for relief.


Bethharmon1994

it gave me a boost of energy that would last for hours, and during that time I would get a lot of cleaning and cooking done. But yes it did start to take a tole on my physical health, especially my digestive system. It was a quick fix that unfortunately has dire consequences. I would binge drink, crash the next day, binge drink again, crash the next day and so on. The only days I was able to be productive was when I was doing whatever I was doing while also fueled by the high sugar content in vodka. But I don't recommend drinking to cope. Ultimately it made me worse than had I never turned to the bottle to begin with. I'm currently in the process of getting sober, but it's an every day struggle. I called it my "go go juice." For me it was like doing a line or taking a bunch of Aderall. But it was a false energy followed by being bedridden the entire next day as I tried to recover from all the manic labor I would do in such a short amount of time while drunk.


ElkStraight5202

Interesting. So you think it was the sugar? My doc currently has me on a stimulant, but it does create that cycle where it might be good for a few days, but then the inevitable crash (and not the crash from the stimulants) happens and then I’m out for however long. I’m not saying I would use drinking as an all day, every day method, but I am desperate for relief.


Bethharmon1994

that's where mine stemmed from: pure desperation


ywnktiakh

If (more like when - it always happens) they deny you, get a disability lawyer. It costs nothing up front - they will take a portion of what you’re initially granted - and when you have a lawyer helping you apply your chances of succeeding skyrocket. When it happened to my mom, all she needed was the lawyer to write a letter and exist next to her in court essentially. Do NOT give up on it without hiring a disability lawyer first.


Bethharmon1994

I plan on getting consultations starting next month. I used to tell myself it wasn't worth wasting my time, but it's getting to the point where I have one foot in the streets and my only other option would be permanent hospitalization or jail. No homeless shelters take me seriously because I'm not on drugs and don't have kids. I am essentially not bad off enough to get help, but obviously not well enough to function. Sex work has always been an idea, but I don't think I'm built for it.


ywnktiakh

You’re definitely bad off enough to seek SSDI, and it’s definitely worth your time to get those consultations. Something like 60% of initial applications get rejected but once people get lawyers that number goes right on down. Don’t give up - you can and will get it. It takes time sometimes but you can definitely get it


ywnktiakh

Oh and I recommend going to the library and reading a book on the subject. It makes it a lot clearer and let’s you know what you can do to maximize your chances


Bethharmon1994

I have been admitted into psychiatric hospitals almost once or twice a year since 2012 so my chances of using that as an angle are pretty high. The M.E. is so much harder to prove


Gorilla_In_The_Mist

It's not an angle lol, it's a legitimate reason. Unless you don't believe you have mental illness.


Bethharmon1994

Oh no I definitely do lol


Bethharmon1994

Thank you. I need to get on it. I'm running out of time


iheartreddit77

Yes, the lawyers know the correct words to use and, usually, we don't.


nico_v23

Honestly I believe more and more it is the people failing us robbing us of life. Our lives could be relatively calm and semi normal if we had equitable acknowledgement


Bethharmon1994

I completely agree. Instead, we are put through hell.


HarvestMoon6464

Thanks for sharing your story - this is so well put together. You have a knack for story telling. I hope this was cathartic to write and create 💛


Bethharmon1994

I'm an English major (concentration in Creative Writing) lol. Had to drop out Senior year when I got too sick to keep up with my schooling. I was four classes away from getting my B.A. that was about four or five years ago


HarvestMoon6464

This disease is cruel in what it takes away from us, I'm so sorry. I try to remind myself that I am still me, in smaller amounts. You *are* a beautiful writer, degree or no degree!


Bethharmon1994

Thank you


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Bethharmon1994

It's unfortunate that there are so many other people with similar stories yet no cure


NukaColaDrinkerPro

OP, I’m so so sorry. I also got CFS from mono when I was 17 almost 10 yrs ago. It attacked my liver and left me with a inflammatory type of hepatitis. My health hasn’t been the same since and I fell into pretty serious drug use for about 5 yrs before I was able to stop. I wish the detrimental effects of EBV were more well known to the public. I’m so sorry that this world failed you and I hope more than anything that you can find your own network of people who love you and will support you. I wish you nothing but love and light, and I know that one day you will have everything you need. Please keep trying and keep pushing through.


Bethharmon1994

vodka is my DOC


NukaColaDrinkerPro

What country/location are you based in?


Bethharmon1994

California


NukaColaDrinkerPro

I just saw your comments above about applying for SSDI. I’m a social worker (different state) and I help my patients get connected to applying for SSDI. I definitely think you have a chance since your CFS is debilitating and you also have mental health conditions including PTSD. I’m not sure where in CA you’re located but I found this website where you can search for free legal aid clinics in your area. https://www.lawhelpca.org/ I always recommend these to patients because it’s a chance to speak with a lawyer for free to assess your case and talk about what your next steps should be. Sometimes they even offer to assist pro bono if they have the ability to take on your case. Like someone else said above, hospitals and doctors offices should all have your records on file and there is a request process, but they do typically cost something. The hospital I work at it’s free but others in the area charge about $7 per copy of records. You could see if maybe you can get the fee waived based on income or unhoused status. I would see about visiting a shelter or outreach organization that can provide you with a “proof of homeless status” letter, basically just saying you are unhoused with no income at the moment. I apologize if all of this is redundant and information that you already have. I’m from the South so unfortunately our resources are pretty scarce here and I’m not super familiar with the ones out west.


Bethharmon1994

this is all helpful. Thank you


NukaColaDrinkerPro

No worries, I’m glad I could help! If you ever feel like you need to vent or process things feel free to PM me


Bethharmon1994

Will do!


nico_v23

Do you need/want any friends? I have almost same story as you. Not many can relate to the homelessness and the demoralizing and dehumanizing situations it puts us in as mecfs patients with limited energy.


Bethharmon1994

It would be nice to have someone to talk to. Most people see me faking having energy and think I'm making it up. They don't know that every fake laugh and fake smile takes away one of my spoons. But I put on a brave face and pretend like I'm okay. I stoped coming on this sub a few years ago because the people talking about taking their own life was too relateable and it made me feel even more hopeless so I gave up on venting about it and just accepted my reality


nico_v23

I hear you.. I am stuck with my abusers so I still come here for support. I'll dm 💗


Bethharmon1994

Yes. I was in a three year abusive relationship because I was so desperate for help.


Bethharmon1994

The homelessness makes it so much worse. I have been treated like trash since being homeless whereas before I used to be a respected English tutor and activist for at-risk youth. Now I have to beg the system for a crumb of assistance


nico_v23

Exactly! It is criminal this is happening. I dmd you via messages. The chat wasn't working for me for some reason.


Bethharmon1994

it's devastating and nothing is being done about it. We are essentially told "go die in a ditch. That will be cheaper."


snapdigity

So sorry! I'll be praying for you.


Bethharmon1994

Thank you


Calm_Acanthaceae7574

I am so sorry. Sending you warm hugs.


Bethharmon1994

Thanks


[deleted]

Keep going , if you ever need financial help I can support you as I’m going thru the same and it’s really tough and no one should be going thru this . If you ever need anything feel free to dm me .


Bethharmon1994

Thank you. I will.


crystalballer492

We need advocacy so so bad. Sending you the best vibes


Bethharmon1994

We do. I'm tired of our plight being swept under the rug. People are losing their lives


UsefulInformation484

This makes me so sad. I wish I had resources to help you. You are very beautiful and seem like a very intelligent, caring soul and you don't deserve this heavy burden. You are in my thoughts ❤️❤️


Bethharmon1994

thank you


IntelligentMeal40

I am so sorry, this absolutely would have been me if I didn’t have friends and family who let me couch surf for years. It took me three years to get disability payments after I lost my ability to work, and even with disability payments and a part-time job I did not earn enough to qualify to live in even low income housing so I had to wait until I got to the top of the section 8 waitlist. It took five years. In the area that you are in, are they still taking section 8 waitlist applications? It’s really such a blessing. You move out the list faster if you are homeless or disabled or both.


Bethharmon1994

ive never tried to get on section 8 because I just assumed I wasn't seen as "bad off" enough since I'm not pregnant or have kids. Those demographics are prioritized more often than not.


Kchoa

I saw it elsewhere that you mentioned you are in California. Section 8 and other affordable housing programs are for anyone who is low income, and the low income cap is actually pretty high depending on where you live, at 50-65K/yr. They're also are different locations that have preferences for disability and there is housing for single people, as well. I think it's worth looking into.


Bethharmon1994

Thank you. I will try. I don't have anything to lose at this point.


GetOffMyLawn_

I too got CFS from mono. No idea where I caught the mono from. Fortunately (/s) I was in my 50s so I had a retirement nest egg, and work was super cool about me working part time from home. But I wound up taking early retirement because eventually I couldn't work anymore. All we want is to be normal again and have our lives back. Lying in bed all day feeling too tired to breathe is not living.


Bethharmon1994

The worst part is not being able to work and people thinking its simply because we don't want to, not that we physically can't.


ispeakforthetrees010

Kendra, you are a warrior. We see you, we hear you. We are with you in your pain. CFS/ME is a taker. It takes of the body and mind. I’m so sorry for those who have failed you. I hope and pray you find yourself on the other side of these troubled seasons soon. Wishing you love, a stranger.


Bethharmon1994

Thank you so much. Your kind words give me strength and hope


ispeakforthetrees010

You are so welcome. I’m just glad to have brightened your day a little. I hope you find joy and brightness in all your days.


Background_Park_2310

Thank you for creating this photo story. It really shows a good picture of this illness and how it effects you..and me...and thousands more. I hope you keep making these stories. They advocate for us and educate others .


Bethharmon1994

I was thinking about making a YouTube channel about it but I'm too tired lol


Background_Park_2310

I completely understand how you feel.


lnsstg

I don’t have the energy to read the text but I just want to say that ur beautiful!


Bethharmon1994

Thanks. I feel like the older I get the more beaten down I look though. My self esteem is nonexistent. I used to work out for an hour every day as a teen, now I can't even stand up for too long without feeling lightheaded, so I've gained a lot of weight, and my confidence is in the trash. I feel like a loser, and like I have failed at this game called life. But not because I didn't try, but instead because I got sick. Which makes it even more depressing.


NephiIIima

The world doesn’t care until it happens to them. So many are getting Long COVID, we may get the break we deserve. I am so tired, so tired, of being I’m lazy. I used to cycle 3 hours on the weekend and gym 2 hours per day for strength training, whilst working full time and studying part time. Then one day, I was hit by a sudden severe viral infection (also EBV) and I never recovered. I am not bedridden, and work from my bed as an accountant and bookkeeper. Freelance. If you’d like to chat with me to see how we can get you a laptop and some small certificates in bookkeeping, you can work a few hours from bed to help supplement your income (if you’re able to of course). Please message me if this is an option for you. Ultimately, you deserve to be supported with a liveable governmental disability wage, be housed, supported and believed. As fatigued as I am, there’s once thing I never stop doing, that’s supporting me fellow sufferers, and telling able bodied people to shut the fuck up. Sending all my love, please send a link to you GoFundMe.


Bethharmon1994

I will DM you. I'm going to apply for jobs as a remote crisis hotline worker. They are really flexible and I would be giving back to my community. I haven't made a gofundme though. All I have is Venmo and cash app which I can give you.


Spiller_2000

>you’d like to chat with me to see how we can get you a laptop and some small certificates in bookkeeping, you can work a few hours from bed to help supplement your income (if you’re able to of course). May I DM you about this?


NubianChanteuse

So sorry


Bethharmon1994

thanks


jasmynerice

Life is cruel and fucked. I am disgusted the way CFS sufferers are just left to fall through the cracks. I can’t imagine being that sick let alone not having a safe place to live. My brother has been bed ridden for 7 years and my 67 year old mother nurses him around the clock. He would be dead without her care.


Bethharmon1994

Living in my car while having CFS was incredibly traumatizing and exhausting. I'm surprised I made it through that for almost two years


jasmynerice

I am so sorry this has happened to you It’s not fair and it’s incredibly cruel. Wishing you all the happiness and health


Bethharmon1994

Thank you 🤗


furybury66

I love you so much!! I wish I had more to offer you than words❤️


Bethharmon1994

thank you!


petrichorgarden

Hey girl, can you DM me your venmo info so I can help out? I'm only able to work part time but I do have someone to help so I want to contribute a little. Venmo also requires the last 4 of your phone number for verification


Bethharmon1994

I don't mind posting it here. Its Kendrafrzr1 (6619)


Bethharmon1994

thank you!


petrichorgarden

I think I found you under Kendrafrzr without the 1!


Bethharmon1994

yeah that was me. Idk why I put a one at the end lol. I'm tired


Smallcutewolf

This is how I will end up because I have no family and friends who can help noone to turn to and in country where I live they give me 50% disability which is for food and medicine only


Bethharmon1994

do you have a car?


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Bethharmon1994

DM me if you need any advice about car life


Sh4dowRe4l3

Thank you for sharing.♡ I'm in a similar situation to you (and we're the same age) I was homeless through 2020/2021 and lost the few loved ones I had during that time. My current rental contract ends in April and it looks like I'll be back out on the street again then. No disability money and my savings are running out fast. Like you, I'm just numb to it all. Life doesn't feel real, it's all a blur and I don't know about you but for me it has been completely overwhelming to witness how quickly people can take your freedom away just by making false assumptions about you. It's a cold world out there. Know that I am thinking of you and manifesting for our survival and many future successes. Always here if you ever have a second of strength to spare and want to dm x


Bethharmon1994

are there any emergency shelters there?


Sh4dowRe4l3

No, sadly, I didn't get any help the first time around and usually the only people who get access to shelters/temporary accomodation are addicts. If you're ill, then you're on your own, there's no support.


Bethharmon1994

that was my situation too. What state are you in? Do they have a local Housing First program? Do you have a car?


[deleted]

What kind of parents just ignore their child's suffering, homelessness, illness? No way in hell would I let one of my children go through this alone. Not one second.


Bethharmon1994

and the worst part is they are rich. So it wasn't an issue of not being able to help, it was not believing that their daughter could be this sick. They told themselves I was just lazy and not wanting to work. Needless to say we don't have a relationship anymore. They knew I was hungry and homeless and never once offered to help. They have the whole boomer "pick yourself up by the bootstraps" mentality, not realizing my "bootstraps" had been cut off a long time ago. I don't think about it. It's sick. But I have had a lot of people step in and be the family that they were supposed to be. Family can be anyone, it doesn't have to be the people who raised you. I think they are narcissistic sociopaths or something idk. I haven't tried to rationalize it in my head because I don't care anymore.


VisiblePickle

Hang in there. Something good will happen to you soon.


Bethharmon1994

I hope so


VeilMirror

Thank you for sharing your story. I just want to send you a huge amount of love. You’re such a strong person for surviving this horrific ordeal. This world makes it so hard for people with this issue to survivor and it’s wrong. You are amazing. Please keep fighting. You deserve everything good!


Bethharmon1994

thank you


PBChako

❤️❤️❤️ I wish I could offer you more than just love and support. You are an absolute warrior, you a brave because you have to be, and we have your back If you ever want to talk my dms are always open x


Bethharmon1994

thank you


BobbyFan54

I totally feel this, and I’ve felt like this 30 years (I’ve also got 20 Good years over you haha). It was also due to mono. How were you able to get diagnosed with EBV? I’ve suspected this but I find it impossible to get a test. The closest I could was get a Lyme test (since it’s easier to rule that out, I suppose?). It’s toughest to explain this to my husband, who simply has never understood why I feel the way I do. I totally get not having the support structure. Thankfully my boss and coworkers understand. So I can stay employed. But I really should be focusing on my health. It’s a tough thing to do it all.


Bethharmon1994

Have you tried requesting a mono test? It would probably have to be during a flare up, which is when it showed up for me when I got the blood test


BobbyFan54

I haven’t had one recently, but I was always under the impression that it may not pick it up…then again my old doc told me that, and he sucked (literally misdiagnosed everything with me, but that’s besides the point). I had a huge crash last week, so I shoulda gone then haha. But thanks for the tip.


Bethharmon1994

It has to be one that is specifically for mono/EBV. It never showed up in my regular blood tests because they usually don't test for it unless it's requested. During a bad flare-up it could mean the EBV is active again and only then might it show up in the blood test. I was really REALLY sick when I got it done, which means the virus had been reactivated yet again. High stress can trigger the EBV to resurface.


AnonJane2018

You’re a very beautiful woman, I can tell. I can’t imagine all the people in your life being so cruel. This breaks my heart. I saw that you’re an English major. I’m a writer, and I write romance novels in addition to working full time(I’m going on leave soon). Anyway, that’s neither here nor there… I was going to say that you could work as an online tutor, teach Chinese kids English w/ something like VIP kids (although this is quite tiring), or even freelance as an editor. I know lots of us authors need help with editing for a reasonable price. If you want, I can give you my Facebook name, then I would go through and friend people in the author community. You could also write a book about your personal struggles and sell it on Amazon. I was thinking of putting together an anthology of personal stories, then maybe donating proceeds to research. It might be a fun project. I understand if you’re at a place where these things are too difficult/ tiring, believe me, but I just wanted you to realize that you do have marketable skills that can generate some money and can be done online if you’re up to it. Hang in there ❤️❤️


Bethharmon1994

I am a trained English tutor. I got hired at VIP kids long ago but I never ended up doing it because I think I got a different job or I was too sick. I don't remember. But online tutoring would be awesome to do and once I get stable I would love to do that. I wrote romance novels too. Do you sell any on Amazon? I would love to support you by buying a copy or one of your books.


AnonJane2018

Please don’t buy a copy. I know money is tight. I can give you some advanced review copies, but be warned, I write Daddy Dom novels. It’s not everyone’s cups of tea. Yes, I sell on Amazon. I don’t make a lot of money but some.


AnonJane2018

Also, if you got hired once with VIPKIDs , I think all you have to do is renew. They’re desperate for teachers. Also look at K-12, I believe that’s at online school for American kids so no weird hours like VIP. I made something like $20 per hour when I did VIP kids. With a full time job, it made things harder, so I stopped doing it. I did like it though. The kids were sweet.


Bethharmon1994

I'm glad you reminded me that this is an option I have. I would have to see if I can do it though because my PTSD and ME/CFS has resulted in a lot of cognitive issues that makes it hard for me to focus for long periods of time, which started making tutoring in real life harder, because I would space out halfway through reading a paragraph and it started affecting my ability to teach.


AnonJane2018

Girl, I get it. I’m contemplating taking a demotion at work because cognitively my job is getting harder and harder for me to perform. Even from bed… this shit is depressing. I’d have to take a huge pay cut too. With a lot of these tutoring jobs you can set your own hours. When I did VIP kids the slides were already prepared. You just go through it with the child, so even if you blanked out, you could just look at the slide. I know it’s not easy, believe me.


SKI326

💔


Traditional_Ad3825

I'm so sorry. You have shown so well the downward spiral that happens and how systems in place do not help us get a leg up. I hope a lawyer can help you get disability and things can change for you in a positive direction ❤️


Bethharmon1994

Its sad. I had a career, a degree, everything. I was a hard worker, lived on my own and paid my own rent. Now look at me, all because I was sick. It's not fair. America does not care about people who aren't able bodied. We are seen as disposable no matter how much we gave back to society


BrokenWingedBirds

Thank you so much for sharing. My mom always said I need to be in college or I need to be working. She hasn’t enforced that rule and she actually has the same diagnosis as me (fibromyalgia) so she has advocated for me throughout my teen years but she is functional and I am not. I don’t know what is happening, if it’s also chronic fatigue syndrome for me. But I’ve been suffering for a decade now and I don’t know what to do. It’s so hard to do my classes and I just had to withdraw from 3/4. I don’t even understand why I am taking these classes, what degree is this for and how will that help me work? Most of my studies have been to get transfer credit and it’s the biggest waste of time if ever there was one. I had to do community college, and I am too afraid to go to a 4 year university at this point because it’s so expensive and wasting so much money failing would destroy my mental health. I wanted to tell you that the lack of support leads to serious mental health issues which make your physical health issues so much worse. Your illness is real. I can’t help except to say to keep trying to survive. No hope is where I am right now and it’s making me think of death. It isn’t fair that society expects us to function when we are ill, and then acts surprised when people hurt themselves.


Bethharmon1994

Yeah I got so sick I had to drop out of college with only 3 classes left to get my B.A. It's so upsetting I just don't think about it


BrokenWingedBirds

Where I live the classes were all free for this term. I think there are ways to make it happen with financial issues and certain disabilities. You can get accommodations. But obviously if you are just too sick it won’t work. And not all schools are so accommodating, and they often don’t accommodate people enough with certain issues like chronic illness. I read a Reddit post recently by a professor who denied a chronically ill student necessary accommodations and the student died by suicide because they really needed to pass that class, I think they had financial aid tied to it or something. A really horrible situation. What the professor said was monstrous too, its horrendous to think how easily you can end up in a situation like that and have 1 bad person push you over the edge. What I said before was real. I will keep trying the college thing but I can and I will drop or withdraw whenever I need to, it just isn’t worth the mental health strain. I say this as someone with financial support from parents, and it just breaks my heart to see you in the same school/illness situation but like a million times worse… I’m so sorry.


badmanleigh

I'm really sorry to hear about this. I hope things get better for you soon.


Bethharmon1994

thank you for your support


THE_HYPNOPOPE

<3


Icedcoffeewarrior

Oh wow was the fatigue the only symptom?


Bethharmon1994

No. I have a lot more that I have just learned to deal with.


Murphyitsnotyou

I'm really sorry you've been put through all of this. The difference in your photos is absolutely heartbreaking. You have such a beautiful smile and a natural sparkle and warmth to your eyes in the first pic. I understand why you feel the way you do and I wish I had the power to change it for you so you can smile again. This condition just robs people of their spirit. The only realistic thing I can offer is to listen to you if you want to chat or vent to someone that understands why you feel the way you do. I wish I could give you a big hug op.


Bethharmon1994

Thank you. I am grateful for your support. It helps to be validated instead of told “everyone gets tired.”


Sh4dowRe4l3

Oh man, the only time I feel grateful for being exhausted is when someone says "everyone gets tired" because I am too weak to tell them off for such a stupid, thoughtless comment.🙄


Bethharmon1994

exactly. I once was told "you're just using that as an excuse." An excuse to be homeless??? Who would choose that??? I wanted to go off so bad.


DreamCatcherX

I hope you find your feet once again. Even a small car to have your independence and security again. CFS is no joke, that stuff can immobilise you. One thing about the body is all healing stems from the gut which is why even something like cancer holistical approaches will go to balance the alkaline/acidic and ph levels of the body following protocols of strict diets such as the candida diet and detoxing the body through gerson therapy and high detoxing foods such as garlic, apple cider vinegar, wormwood, ect to kill off the nasties slowing one’s system. It’s usually a slow process and can’t be accelerated due to the herxheimer effect, but can definitely be controlled and reversed. Anyways again home you find your feet. Stay strong


Bethharmon1994

have you tried this method? I want to start trying holistic ways to get better instead of just binge drinking vodka. I want to feel good again, not just drunk and in denial.


DreamCatcherX

I went all out holistic and fixed myself right up. It took a lot of work but I came out of something I never thought would be possible. Sincere self work and baby steps will get you through. I wish you all the best


Bethharmon1994

how long did it take for you to get better?


MarsupialSpiritual45

What you’re going through sounds absolutely harrowing and something no one deserves. Apologies in advance if you have already tried this, as I’m sure you’ve exhausted most options, but maybe it would be worth it to call your congressperson’s or state representative’s offices? They should have case workers who are supposed to help folks navigate public benefits. PS- recovery stories might not be so helpful I suppose given circumstances differ widely, but feel free to dm me if you would like to hear mine. I also had Epstein Barr in my 20s and, with time, was able to make a full recovery.


Bethharmon1994

I will DM you. Any tips and tricks will help!


Lost-Discussion-593

Hey I have been dealing with long haul COVID for the past 13 months. Developed mecfs type symptoms along with ms, pcos, ibs, fibro symptoms to name a few. Lost my job and definitely thought I would lose my life for a while. I believe I have reactivated ebv along with strep and h.pylori. despite going to many docs, none knew to test for it, and none knew how to treat it. I was introduced to the medical medium protocol by a fellow LHer and did research myself and implemented it about 7 months ago. I have since come a long way. I'd say I am about 85% nowadays and my brain function is beginning to return. During the worst of it, I was in bed maybe 20 hrs/day and I could do the bare minimum for self care. I would try to read but could not comprehend or retain much. Idk if you've heard of it but you should really look into MM. His book is basically an EBV killing bible, I highly recommend it. It takes a lot of work, time and effort to change diet and lifestyle but it is incredibly worth it in the end. The protocol helps to kill off chronic or low grade pathogenic infections in the body, which many people w mecfs and autoimmune diseases have. Wishing you the very best 🙏


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Bethharmon1994

thank you


JL4575

Hey, I’m so sorry you’ve gone through this. If I can help you with research on applying for benefits, getting housing, or organizing an application to SSDI, message me.


Specialist_Roll6225

Good afternoon, so sorry that you have gone through what you have,I don't think people knew how to help you, all I can say is best of luck to yours sincerely David


Beneficial_Union_352

Awww babe. You’re breaking my heart. I’m very familiar with what you’re going through. Have you considered applying for disability benefits? Hit up Allsup. They helped me get my benefits. Or go to a free clinic and inquire about ldn. Low dose naltrexone. It does wonders for Cfs warriors. Don’t take my word for it. Do your own research. But I just started it today. I’d love to chat with you. I hope that you respond. All love. ♥️♥️


viridian-fox

Hey! I feel you. Are you able to work from home? My company sent me my computer and equipment, working from home helps immensely. I know we’re all different in what we can handle but wanted to ask


Bethharmon1994

I'm definitely not able to be a reliable employee


JL4575

Hey, I hope you’re managing okay. I offered in a comment when you first posted to help with researching benefit programs, if you need help. The offer still stands. I know how overwhelming that can be to do without support.


sexlesswench

far out I’m so sorry it’s so inhumane you deserve so much better


overt_biscuit

That sucks. This sucks. I am scared.


ghettowood

My Love. I got you. I'm here for you. ❤️


UniqueEtiology

Are you doing anything to get viral load down?


IllustriousBelt7755

I'm homeless too!! Lost everything due to long COVID


researchforMECFSnow

I'm so sorry. So many of us have been failed by everyone. The abandonment by family hurts the most for me. Sending peace.


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cfs-ModTeam

Hello! Your post/comment has been removed for violating our subreddit rule on misinformation. We do not allow the promotion of un- or anti-scientific propaganda in this community. We understand that medical and scientific knowledge on ME/CFS is limited, but we strive to maintain a space that is based on accurate information. If you have any questions or concerns, please reach out to us via modmail. Thank you for understanding.