u/thepensiveporcupine

I’ve been using a manual toothbrush because I never liked electric toothbrushes due to sensory issues, both the noise and the vibration in my mouth. However, I’m wondering if it’s time now. Dentists recommend them anyways, and it’s less hand movement involved which is more exertion, but I’m wondering if the exertion of being overstimulated for 2 minutes is a worthwhile tradeoff for the exertion of manually brushing my teeth. Or if there is an electric toothbrush that doesn’t make too much noise?

I’m moderate/severe btw, but to play it safe I just consider myself severe.

Obviously lack of research is a barrier but is it possible that this disease just can’t be treated properly? Especially if it’s primarily neurological, as neurological diseases seem particularly difficult to treat. Pretty much every immune modulating treatment has been trialed for ME/CFS with limited results. While I do believe this disease is primarily “neuro-immune”, it seems a bit more complicated, like the entire immune and nervous system has been completely rewired and is nearly impossible to fix. Obviously we need a LOT more money to be put into quality research but I worry that even if we got the same funding as other serious diseases, we still might never see an effective treatment.

Grief and losing opportunities is a part of life, but that’s pretty much all life is with this illness. You lose friends, family, relationships, the ability to have kids, the ability to work and earn money, the ability to travel, the ability to truly LIVE. You see people who are childless due to infertility but are otherwise healthy and they’ll start to focus on other aspects of life, like their career or travel or pouring energy into caring for children or animals. But there is nothing you can do to mitigate the grief you feel for losing certain aspects of life due to this illness because you lost EVERYTHING. I’m sick of being told by everyone to accept this piece of shit life and just put up with the fact that science is slow. I don’t care, this is my fucking LIFE and it’s OVER!!! Except not really because I have to suffer through it for several more decades. But society would rather turn away and pretend it’s fake.

Aside from the obvious reasons (misogyny, associations with affluent white suburbanites, perceived laziness, lack of biomarker, associations with covid). There is a strong association between stigmatized chronic illnesses like ME/CFS, POTS, MCAS, hEDS, etc and autism.

I don’t think the average person is consciously aware of this correlation, but people with autism are treated as social pariahs, especially if they are queer or have more alternative/geeky interests. Unless you have the type of autism that allows you to mask well and have a socially acceptable special interest, people just think you’re weird. Autistic people are ostracized and not taken seriously. This translates to medicine. Almost every comorbidity associated with autism is treated as a mass hysteria. There’s a certain narrative of bad faith questions like “Why does everyone in (niche community) have (insert highly stigmatized chronic illness)?”

I also hate that leftists seem to be promoting it so much. All this fake claiming on social media is the reason behind that one article asking why so many young women use canes now. All they’re doing is giving malicious journalists more ideas to run with, which then lead to politicians making it even harder for us to access disability benefits and healthcare. This is the shit that gets us killed.

For those that don’t know, an inner monologue is when there is a voice in your head reciting your thoughts. Apparently only 30-50% of people have this, the majority of people think in pictures or concepts. The reason I ask, as someone with an inner monologue, is because one of the signs I get that I’m approaching a crash is when I’m trying to finish a thought and forget a word, then get dizzy as I try to push through. Then I resort to just turning my brain off and mindlessly scrolling through reels or play a block game on my phone, because at that point even thinking in pictures is hard.

I’m curious because I believe having an inner monologue is more common amount neurodivergent people and there seems to be a lot of us in this sub. I wonder if having an internal monologue uses up more cognitive energy and if that has an effect on severity level? I’d also like to hear from those of you who don’t have an internal monologue. What do you experience when cognitively fatigued or in PEM?

Sufferers that are more well versed in science than me seem to be in agreement that the chance of seeing a life changing treatment in the next decade is slim to none. I’ve been hesitant to “overmedicate” myself because I was holding out hope that I could maybe naturally get to a mild baseline and hold on for a better treatment but I realized I was being delusional and I might as well put bandaids over my symptoms because it’s going to be a LONG time before I get my life back, and it’s possible I never will. It probably doesn’t seem like this big of a deal to those of you who have been sick for decades but I really hate medication, especially for an illness in which most of the medications available to us don’t touch the root cause. At this point, I don’t think there’s a single system in my body that isn’t being chemically altered…except for the one system that needs to be altered. So the rest of my life is just dedicated to remembering to take certain pills at a certain time and having to treat myself like a guinea pig and deal with side effects, for what? I mean, my only other option is to spend money I don’t have on even more experimental treatments, or just give up completely and focus solely on pacing and risk getting worse from my unmedicated comorbidities.

If you need to lay down, do you FEEL your blood pressure rising? Rn it seems counterproductive to be on a medication that makes it so that I need to be upright when I feel like what I actually need to do is spend more time laying down but I have to take this because I don’t want my doctor to think I’m noncompliant. I don’t care if my blood pressure is high if I don’t feel it, I’m more concerned that it will make resting more difficult.

Edit to clarify: I have not started it yet, just want to know what to expect

I wouldn’t even consider myself severe but I just can’t take this anymore. I don’t know what I’ll do if (probably more of a “when”) I become severe or very severe. Why do I feel like I’m handling this so much worse than everyone else? I hate being sick, I just wanna wake up one day and feel like I’m back to normal. When I feel like this, I get angry that nobody can figure out this illness and that there’s no promising treatments on the horizon. I get so angry at the thought that I have to feel like this for the rest of my life and it’s not getting any easier. Why can nobody end my suffering? I’m so mad at everyone who can’t help me. It feels like nobody is angry enough.

I keep imagining a future in which I’m no longer sick. When this is all over, I wanna just live alone in the woods and take care of several animals. As I thought more about this, I realized that I sound like Lennie from Of Mice and Men and probably won’t get my happy ending.

I crashed last week and seem to be out of the worst of it but slightly before the crash I started to feel really dizzy. This happens even when I’m lying down with my eyes closed, in fact, that might make it worse. It’s worse at night and is triggered by thinking too hard, swallowing too hard, or breathing deeply. It will feel like the room is spinning and my brain just stops working. It will last for a few seconds before I panic and the adrenaline snaps me out of it. This makes it hard to fall asleep. At first I thought it was just a PEM symptom but now I’m beginning to think I’ve developed a comorbidity like vestibular migraines or possibly CCI. If this is a ME/CFS symptom then why does it happen and how can I make it stop?

I’m just getting out of a pretty bad crash brought on by a period of a few days in which I was anxious about the future and depressed about the state of my life. I didn’t even think it was THAT bad but apparently my baseline is so low now that even that was too much. Now that the brain fog cleared up a bit and I can start actually thinking about my life again, the depression is back, and with it I seem to be feeling worse again so I’m intentionally avoiding thinking about things. But wtf, I can never feel a negative emotion ever again? While I’m going through one of the worst things a human can experience? This isn’t sustainable. I’m not talking about managing it, as I know the general advice is “the only way out is through”, I CANNOT handle any negative emotion without crashing so it seems I need to avoid them entirely.

Disclaimers: Yes, I am seeing a therapist. No, I will not get a new one because I’m comfortable and don’t have the energy to update a new one on all my lore (plus this one is very accommodating). Also not willing to go the medication route because I‘ve been there and done that, antidepressants don’t fix the problem and I learned that I don’t metabolize them well. Plus I’m on a million different meds and concerned about polypharmacy.

One of the worst parts of crashing is being unable to take care of my hygiene. It’s actually one of the things I fear most about declining as well, since I don’t know how much longer I’ll be able to shower regularly on my own. At baseline, I shower (sitting down) every other day. During flares I will shower every 2 days. Now I’m in a pretty nasty crash and today was supposed to be a shower day but I don’t think I could do it safely. I’m hoping I’ll be able to tomorrow but I’m afraid I won’t.

I have sensory issues when it comes to the feeling of greasy skin and hair and smelling my own body odor. I start to get itchy and I suspect my own dander makes my allergies worse, which worsens inflammation. I’m also concerned about the risk of yeast infections or UTIs. Ugh I wish hygiene didn’t take so much energy. I’d feel so much better if I could snap my fingers and be clean :(

Idek if I’m in a crash or if this is just a new, worsened baseline. I’ve been feeling flu-like and weak but it genuinely feels like my brain is mush. I have trouble thinking…it hurts to try to finish sentences in my head, I forgot names and words, and reading on my phone is getting more difficult. When I try to push through the fog, I feel nauseous, weak, and a sense of vertigo. It feels like I’m on a boat that’s spinning around, this is even just when I’m lying down. I got my blood pressure taken at the doctor and the top number dropped by 20 when I stood up (I believe I went from like 110/70 to 90/66 in less than a minute). I definitely feel this lightheadedness on standing but I think my BP runs low even just laying down. I go from having a high HR to bradycardia with PVCs. I’m also more sensitive to light and movement. And my muscles are weaker, I’ll have moments where they seem to just turn to stone. Idk why I feel so much worse, the only thing that seems to have changed is that my emotional state has worsened but aside from that I feel like everything has actually gotten better…better air quality, I’ve been eating less sugar, doing less, but I guess I’ve been more anxious and depressed and this is the price I have to pay for daring to grieve my life…

There’s a lot I’m worried about, particularly an upcoming appointment, and I’m just so worried it won’t go well and I don’t know what to do about future care. All this stress just has me feeling…weird. It’s not even like a usual crash, I just feel weird. Like my body is shut down but not in the usual crash way, it’s hard to explain. And now that I’ve manifested it, the appointment probably will go poorly because my brain is mush and I probably won’t be able to explain anything well. I probably just sabotaged my future care and will be stuck with my previous provider who gaslights me and who I didn’t end on good terms with…

I’m only in my 20s but I’m just so over life. My teen years sucked and my life never took off because I got sick right before I could start a career. I’m stuck in my body, dealing with bullshit I never would’ve tolerated prior to getting sick. I have no real options anymore. If I were to go by what my mind is telling me to do, I’d run away, delete all my socials, and start a new life. But how the fuck am I supposed to do that when I struggle just to get around my own house? And with what money? This just couldn’t have happened to me at a worse time and although I’m an atheist I just can’t shake the idea that I’ve been cursed. I want nothing more than to just undo this curse.

I always knew that nice people were far and few between, but since getting this illness I’ve come to realize that even the nice ones aren’t that nice. People are determined to believe this disease is fake even when presented with evidence that shows otherwise. I believe it’s actually the majority of people who think it’s psychosomatic, even when they’re nice to me it feels like there’s that bit of doubt that I’m not REALLY as sick as I say I am. It makes me feel like nothing is ever gonna get better for me because the quality of my life depends on other people, and they have proved time and time again that not only do they not give a shit about me, but probably want me dead.

I’m on the severe end of moderate so I’m pretty limited in my mobility due to a combination of severe muscle weakness and POTS. Sometimes I will get an adrenaline surge or feel very anxious and will feel a strong need to move my body to get that pent up energy out, although I know I would crash if I went on even a super short walk. I also get this after meals when I can feel my blood sugar spiking. I could feel that my lack of movement is damaging my body, but movement is also damaging my body. Either way I feel super uncomfortable all the time and like my body is a complete disaster.

I never quite felt comfortable using this app but somebody gave me a free armband and now I feel obligated to use it. My main problem is that I feel like getting a notification that I’m in my exertion zone if I’m in a situation I can’t get out of (like an appointment) or even if I’m just sitting there would stress me out and make it impossible for me to actually rest. It’s also worth noting that emotional distress has been my demise for the entire duration of the illness, since it’s nearly impossible to pace.

It’s so terrifying to feel myself forgetting words, not comprehending the things I read, not knowing how to respond to people, and losing track of time. And then when I force myself to think, it feels like I’m spinning around in space and I feel nauseous, oxygen deprived, and like I’m on the brink of death. Especially when this is in combination with the physical symptoms, feeling like my muscles are turning to stone and I may one day never be able to move again. I hate it so much. I wish it would stop happening. I can’t force myself to pace better or make better lifestyle choices either because I have no sense of discipline. I never have, it’s partially how I ended up this sick to begin with.

As much as I hate the physical symptoms, there’s just something about the brain fog that when it flares, I start spiraling thinking I’ll never be able to use my brain properly ever again and I desperately wish I can get reprieve. I’ve pretty much accepted that I’ll never be able to exercise again but being able to use my brain to at least 90% would be a fair compromise I think…

I wanna be free. I’m at the age where I should be taking risks and pushing my body to its limit. I wanna make money, exercise, travel, just feel like a human. I’m supposed to spend the rest of my life pretending to be dead until I actually am? Sounds like a scam to me. Every day I’m stuck with the memories of my old life, yearning to go back, and wondering what my life could’ve been like. I wish I could at least see it. I wish I could see how pretty I was supposed to be, the job I was supposed to have, all the friends I could’ve made, my future husband and kids and whatever else. I know that’s not how life works though. None of this is fair, it’s not the life I wanted. It’s among the worst things I could’ve imagined for myself. I’m angry about it 24/7 but can’t express it because of course, punching a pillow or screaming takes up too much energy than my stupid body can produce.

Fuck this stupid body or brain or whatever it is. I never should’ve been born if this is all I was gonna be.