u/sounds_of_sadness

Many (if not most) of the recovery stories I see are from people who were bedbound or severely ill for only a couple weeks/months. Or from those who were only mild/moderate for a short period of time.

I’m looking for recovery stories that I can relate to. Personally, stress and COVID triggered my CFS in 2023. I progressed from mild to severe over the span of 3 years. I’ve been oscillating between being housebound/bedbound for almost a year now, but mostly bedbound.

I didn’t figure out it was CFS until July/August of last year. Unfortunately I spent a lot of time on r/cfs since then and just got worse and worse. I seem to have a progressive form of CFS (a mindset I’m trying to get out of). I started nervous system work about a month ago and am currently reading books and educating myself to the best of my ability, but I still feel disheartened reading recovery stories from those who had much milder symptoms.

Does anyone know of anyone who was severe/very severe who recovered? Or where I can find such stories?

I live in the US and have 3 back to back appointments next week for patch testing at my local allergy office. I’m scared to leave my house 3 times in one week. The first appointment is on Monday to apply the patch, then 2 more appointments on Wednesday and Thursday to confirm results. Is this normal/common? I tried to decline them but my doctor thinks it would be helpful since I have contact dermatitis.

Any recommendations on what I should do? I want to cancel them but also think it would helpful. I’m moderate/severe right now and only leave the house for appointments.

I’m 26 and I pay for literally everything on credit cards. I can’t afford supplements or treatments. I can barely afford food. I’m lucky enough to live with a parent who doesn’t make me pay rent, but I pay for everything else on my cards. I have no idea what’s gonna happen once my credit cards run out and can only pray that I somehow get disability beforehand… I don’t currently qualify for Medicaid or any other assistances in the US. I got the ME/CFS type of long covid and I’m currently severe/unable to work.

I wish I was in a better financial position before I got sick, but I had just graduated college and had no savings. I barely graduated and crashed hard afterwards. Was never able to start a real job. Sometimes lurking this sub makes me angry because I see so many people who get to see specialists and a plethora of other doctors, or those who get to try new treatments and medications that I have no financial/physical access to. Reading recovery stories can be disheartening because it’s obvious they had financial help in recovery. I apologize if this comes off badly, I’m just exhausted being poor and wondering if anyone else can relate.

I suppose Reddit is probably a bit biased towards those who are better off though.

Just wanting to vent. I’ve been seeing so many doctors but haven’t been diagnosed with anything. I have POTS-like symptoms but I didn’t get diagnosed with POTS. MCAS/allergy symptoms but I didn’t test positive for any allergies. Hypoglycemia-like episodes but I don’t have hypoglycemia or anything wrong with my insulin. On paper, nothing is wrong with me. The only thing I got diagnosed with was leukopenia but the hematologist said I’m fine and to just keep an eye on it.

Am I making up my symptoms? I’m worried because I’m heading towards severe and want to apply for disability but so far nothing concrete is wrong with me.

I got the ME/CFS version of long covid and I’ve been getting progressively worse over the course of the past year. I started at moderate and even though I’ve tried hard to pace (had to quit my job and spend most of my time bedbound), I’m almost severe now.

I’m in the worst crash I’ve had to date. All my muscles burn. It takes immense effort to walk to the bathroom. My legs feel so weak and like they’re made of concrete. I fear I won’t even be able to move them one day. I can hardly tolerate any lights or sounds or screen time. I feel most at peace in complete darkness with noise cancelling headphones. Having a lot of trouble falling and staying asleep too, and my POTS-like symptoms are going crazy.

I just wanted to vent. I’m really scared right now. I haven’t even had time to figure out my baseline because I’m always crashing, but none of my crashes have been this bad so far. I’m resting as much as I can but it never seems to be enough 😔 I really don’t want to be severe. I don’t understand why this is happening to my body. Why is it betraying me like this?

I had a lot of hope in this medication but sadly the side effects were too much for me to handle. I feel like I’m an anomaly though. I was on just .01mg for two months and experienced worsening anhedonia, depression, derealization, and depersonalization. I looked at my family and it felt like they were just random people I had no connection to. Very scary. All the symptoms went away once I stopped taking it.

I’m in a bad crash now and I’m just frustrated that one of the best medications to manage crashes didn’t work for me.

I don’t know if this makes sense but I’ve been curious lately. Statistically speaking, some of us with CFS probably would have reacted poorly to friends/family getting CFS. I’ve been thinking about this with long COVID too… how I would have reacted if someone close to me got sick with an unexplainable/undiagnosable disease, instead of myself.

I remember seeing TikToks of someone with CFS before I got it. I remember feeling sad for them and thinking how horrible a life like that must be. So I’d like to assume I would have been compassionate, but wouldn’t we all like to think that?

I have similar thoughts about wealth and poverty. If someone who grew up poor suddenly became rich, would they end up becoming the kind of person they’ve spent their whole life criticizing?

I’m neurodivergent and have had lots of issues keeping friends over the years. Most of them ended badly. I keep thinking about these friendships and all my regrets from the past. What else is there to think about! Meditation helps but my thoughts always seem to return to the past during radical rest.

Would it be possible for us to strike against health insurance in the U.S. by just not paying what insurance doesn’t cover? Or would that hurt doctors and hospitals?

My period is 5 days away and I’m contemplating breaking up with my girlfriend. She’s 24, I’m 25. We’ve been dating a little over a year. I suppose I just want to vent my frustrations somewhere. I’m making a list of reasons I want to break up… I’m thinking I’ll write this and then revisit it once my period is over.

Pros: I love her so much. I became disabled over the course of the past year and she’s been by my side the whole time. She’s incredibly supportive and caring. My parents love her. I can no longer work so she uses my car and pays for car insurance. My disability is very isolating and I enjoy her companionship. I have no friends nearby, just her. I’m unable to keep up with laundry/chores and she helps a lot with that. I am very grateful for her and say thank you every day. I am still very much in love with her. I love making crafts and hanging out with her. She’s really artistic and creative too. She loves animals and we love to eat the same foods. It’s so fun being girls together! I love being gay with her. We share clothes and cook together. She loves and accepts me for who I am even though I have a lot of flaws. She’s taught me a lot about how to love others and go through life. I’d still want her in my life even if we break up.

Cons: She is anxiously attached and not willing to put it any work to fix herself. She wants to be with me 24/7 and becomes upset and spirals when I want space. It seems we’re always upset with each other nowadays. She also has mental issues (depression/anxiety) but she doesn’t have health insurance and can’t afford healthcare. She’s content working at a low-paying job and doesn’t want to grow or change. She calls out of work a lot even though she has no money. I find myself fitting the bill for food and outings even though I’m using credit cards, and sometimes I think she takes me for granted financially. She grew up poor and seems to have the mindset that everyone else around her owes her. I genuinely think therapy would help her and our relationship so much, but she won’t be getting it any time soon and it seems she doesn’t really want to. She doesn’t have hobbies or friends and spends most of her free time on TikTok. She needs a lot of reassurance and constantly asks me if I hate her or love her. It’s getting exhausting, but I do have multiple issues as well… I just started therapy and am in the process of trying medications.

We both have PMDD which of course doesn’t help either. Being in a relationship is just so hard sometimes. I can’t tell if my thoughts right now are PMDD thoughts or if they’re genuine.

She’s supposed to move in with me in August. We were friends beforehand and she’s my first relationship. I kind of just want to go back to being friends. The relationship is starting to exhaust me and cause me a lot of stress. I don’t know if we’re just incompatible or if these issues can be fixed with time, but I find myself daydreaming about how much easier things would be if we were just friends instead of lovers. Maybe I would reconsider if she can get herself together mentally and financially.

I feel like a monster typing all of this out. Ugh. Idk what to do. I’m open to advice.

I swear I need to make a CFS elevator pitch or something. Whenever I explain my symptoms to doctors I feel like I understate what I’m actually experiencing so they think it’s just bad fatigue. My therapist knew about ME already but I think she assumes it’s bad fatigue as well and she doesn’t seem to understand crashes… but it’s not like I explained them very well. I keep forgetting to emphasize how debilitating the fatigue is, along with other symptoms. I wish I was more articulate.

I told her I crashed from going to the grocery store and she thought someone/something in the grocery store triggered my crash, but it’s the entire act of going to the grocery store that triggers my crash. Not just one little thing. I’m tired of explaining but I know I can’t expect people to understand something they’ve never experienced either 😭

I live at home with him and he pays for my health insurance and doesn’t charge me rent. I consider myself moderate/severe. I haven’t been able to work for a couple months and I don’t think I would be able to unless I completely stop doing house chores and cooking for myself. He’s been very understanding but definitely not the type to cook or clean for me.

He keeps asking me if I’m able to work but I don’t know what to tell him. Today he asked if I’d be able to work a couple hours a week and perhaps I would, but I’m not sure. I can play videos games for about 45 min per day but I can’t read books. I can watch TV shows with easy plots for about an hour or two per day as well. I can’t really do anything creative though, my brain just doesn’t work anymore. I have a degree in analytics but I don’t think I would be able to analyze anything in this state.

I’d like to apply for disability as well and am in the process of (hopefully) getting diagnosed. Currently living off of credit cards and what’s left of my student loans.

I’m not sure what to say to him next time he asks me again, which will probably be soon…

TLDR: my dad keeps asking me when I’ll be able to work, but I have no idea how to answer him as someone who is moderate/severe